Cohorts as Platforms for Mental Health research (CaP:MH)
Lead Research Organisation:
University of Bristol
Department Name: UNLISTED
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Technical Summary
We will enhance two of the UK’s premier population based birth cohorts to create an intergenerational, integrated resource for mental health research with an unparalleled capacity to consider the importance of the early life course. This resource will be readily discoverable and available through a proven secure informatics platform with the flexibility to incorporate
other cohorts as part of a larger resource. The Avon Longitudinal Study of Parents and Children (ALSPAC) and the Born in Bradford (BiB) cohorts together include over 40,000 participants across three generations. Both cohorts are deeply phenotyped through clinic and questionnaire assessments and further enhanced through multi-omic measures and linkage to routine health and social records. We will extend this linkage to a comparable level in both cohorts particularly
to primary care patient records ensuring this is higher than in any comparable study based on the multiple strategies we have developed and the strengths of our underlying ethical and technical infrastructure. To this resource we will add additional measures from internet based applications and social media feeds underpinned by our expertise in data science and our strengths in participant engagement. Indicative projects, both individually in each cohort and across the integrated cross-cohort resource, will demonstrate value in enabling mental health discovery. In these projects we will further develop and deploy innovative bioinformatic and biostatistical approaches to facilitate discovery and strengthen causal inference developed in our MRC Integrative Epidemiology Unit to maximise the value that existing information can add to observational research. We will build on ALSPAC’s established, sustainable infrastructure for secure, cost-efficient data sharing based on our own instance of the UK Secure E-research Platform (UKSeRP), extending this to include BiB and providing the foundation of a Mental Health Data Platform to support discovery science and service evaluation at a scale that will underpin our ability to understand and effectively improve mental health in individuals and the population.
other cohorts as part of a larger resource. The Avon Longitudinal Study of Parents and Children (ALSPAC) and the Born in Bradford (BiB) cohorts together include over 40,000 participants across three generations. Both cohorts are deeply phenotyped through clinic and questionnaire assessments and further enhanced through multi-omic measures and linkage to routine health and social records. We will extend this linkage to a comparable level in both cohorts particularly
to primary care patient records ensuring this is higher than in any comparable study based on the multiple strategies we have developed and the strengths of our underlying ethical and technical infrastructure. To this resource we will add additional measures from internet based applications and social media feeds underpinned by our expertise in data science and our strengths in participant engagement. Indicative projects, both individually in each cohort and across the integrated cross-cohort resource, will demonstrate value in enabling mental health discovery. In these projects we will further develop and deploy innovative bioinformatic and biostatistical approaches to facilitate discovery and strengthen causal inference developed in our MRC Integrative Epidemiology Unit to maximise the value that existing information can add to observational research. We will build on ALSPAC’s established, sustainable infrastructure for secure, cost-efficient data sharing based on our own instance of the UK Secure E-research Platform (UKSeRP), extending this to include BiB and providing the foundation of a Mental Health Data Platform to support discovery science and service evaluation at a scale that will underpin our ability to understand and effectively improve mental health in individuals and the population.
Organisations
- University of Bristol (Lead Research Organisation)
- Curtin University (Collaboration)
- St Thomas' Hospital (Collaboration)
- UK Biobank (Collaboration)
- QUEEN MARY UNIVERSITY OF LONDON (Collaboration)
- Bradford Institute for Health Research (BIHR) (Collaboration)
- University of California, Berkeley (Collaboration)
- The Lundbeck Foundation Initiative for Integrative Psychiatric Research (Collaboration)
- Cardiff University (Collaboration)
- EMIS Group (Collaboration)
- NHS South, Central and West Commissioning Support Unit (Collaboration)
- East London Genes and Health (Collaboration)
- Stanford University (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- Thames Valley Police (Collaboration)
- University of Iowa (Collaboration)
- University of Bristol (Collaboration)
- University of Copenhagen (Collaboration)
- University College London (Collaboration)
- Department for Education (Collaboration)
- PUBLIC HEALTH ENGLAND (Collaboration)
- Ministry of Housing, Communities and Local Government (Collaboration)
- Bradford Metropolitan District Council (Collaboration)
- Royal College of Surgeons in Ireland (Collaboration)
- National Institute for Health Research (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- UNIVERSITY OF EXETER (Collaboration)
- Stanford Medicine (Collaboration)
- UNIVERSITY OF GLASGOW (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
People |
ORCID iD |
Publications
Zhang ML
(2020)
Social work contact in a UK cohort study: Under-reporting, predictors of contact and the emotional and behavioural problems of children.
in Children and youth services review
Tuckett A
(2019)
Health and Care Intelligence: A Blueprint for Data Access
Threapleton DE
(2021)
Maternal iodine status in a multi-ethnic UK birth cohort: Associations with child cognitive and educational development.
in Paediatric and perinatal epidemiology
Teyhan A
(2023)
Linkage of the Avon Longitudinal Study of Parents and Children (ALSPAC) to Avon & Somerset Police regional police records
in Wellcome Open Research
Tanner AR
(2023)
Epicosm-a framework for linking online social media in epidemiological cohorts.
in International journal of epidemiology
Sohal K
(2022)
Connected Bradford: a Whole System Data Linkage Accelerator
in Wellcome Open Research
Skatova A
(2019)
Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children
in Wellcome Open Research
Skatova A
(2023)
A protocol for linking participants' retailer 'loyalty card' records into the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
Shiells K
(2022)
Participant acceptability of 'digital footprint' data collection strategies: evidence from the ALSPAC birth cohort study
in International Journal of Population Data Science
Shiells K
(2022)
Participant acceptability of digital footprint data collection strategies: an exemplar approach to participant engagement and involvement in the ALSPAC birth cohort study.
in International Journal of Population Data Science
Sharp TH
(2020)
Population neuroimaging: generation of a comprehensive data resource within the ALSPAC pregnancy and birth cohort.
in Wellcome open research
Rivas I
(2018)
How to protect school children from the neurodevelopmental harms of air pollution by interventions in the school environment in the urban context.
in Environment international
Pettinger KJ
(2020)
Starting school: educational development as a function of age of entry and prematurity.
in Archives of disease in childhood
Northstone K
(2019)
The Avon Longitudinal Study of Parents and Children (ALSPAC): an update on the enrolled sample of index children in 2019.
in Wellcome open research
Norris T
(2018)
Investigating the relationship between fetal growth and academic attainment: secondary analysis of the Born in Bradford (BiB) cohort.
in International journal of epidemiology
Mummé M
(2023)
The Bristol Self Harm Register (BSHR) dataset: Linked self-harm register records of the children in the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
Mummé M
(2022)
The Bristol Self Harm Register (BSHR) dataset: Linked self-harm register records of the children in the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
McEachan RRC
(2018)
Availability, use of, and satisfaction with green space, and children's mental wellbeing at age 4 years in a multicultural, deprived, urban area: results from the Born in Bradford cohort study.
in The Lancet. Planetary health
Mahedy L
(2018)
The effect of parental drinking on alcohol use in young adults: the mediating role of parental monitoring and peer deviance.
in Addiction (Abingdon, England)
Madley-Dowd P
(2023)
Intellectual disability in the children of the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
Madley-Dowd P
(2022)
Intellectual disability in the children of the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
Maciejewski G
(2019)
The cost of learning new meanings for familiar words
in Language, Cognition and Neuroscience
Hines LA
(2020)
Association of High-Potency Cannabis Use With Mental Health and Substance Use in Adolescence.
in JAMA psychiatry
Hickman M
(2018)
The impact of buprenorphine and methadone on mortality: a primary care cohort study in the United Kingdom.
in Addiction (Abingdon, England)
Giles OT
(2018)
Hitting the Target: Mathematical Attainment in Children Is Related to Interceptive-Timing Ability.
in Psychological science
Eddy LH
(2019)
A systematic review of randomized and case-controlled trials investigating the effectiveness of school-based motor skill interventions in 3- to 12-year-old children.
in Child: care, health and development
Di Cara NH
(2020)
Views on social media and its linkage to longitudinal data from two generations of a UK cohort study.
in Wellcome open research
Di Cara N
(2020)
Views on social media and its linkage to longitudinal data from two generations of a UK cohort study
in Wellcome Open Research
Cunningham AC
(2019)
Using kinematic analyses to explore sensorimotor control impairments in children with 22q11.2 deletion syndrome.
in Journal of neurodevelopmental disorders
Boyd A
(2020)
The potential for linking cohort participants to official criminal records: a pilot study using the Avon Longitudinal Study of Parents and Children (ALSPAC).
in Wellcome open research
Boyd A
(2020)
The potential for linking cohort participants to official criminal records: a pilot study using the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
Bird PK
(2019)
Growing up in Bradford: protocol for the age 7-11 follow up of the Born in Bradford birth cohort.
in BMC public health
Berry EDJ
(2019)
Cognitive Offloading: Structuring the Environment to Improve Children's Working Memory Task Performance.
in Cognitive science
Anderson E
(2020)
Recruiting Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to Internet-Delivered Therapy: Internal Pilot Within a Randomized Controlled Trial
in Journal of Medical Internet Research
| Title | Act Early: Holme Wood |
| Description | A film that captures the work undertaken to connect data scientists with the Holme Wood community. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The video was used to engage senior policy makers from the District to attend a meal organised by the research team to explore how the insights from the data science projects could be used to improve lives for people in the area. |
| URL | https://drive.google.com/file/d/19S0_2KrutRKxqows1kDwy0M0yaW-3Uaw/view |
| Title | Virtual reality visualisation of Born in Bradford dataset |
| Description | We commissioned two artists to create an interactive virtual reality experience that would help the community understand the power of data science and the usefulness of linking datasets. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2019 |
| Impact | The display was featured within the UKRI's First Year anniversary event and highlighted in Sir Mark Walport's speech. The display was the highlight of a Festival that attracted over 500 people (attending to learn more about the Born in Bradford study) The display was shown at the Tanween arts festival at the King Abdulaziz Center for World Culture (Ithra). The Center for World Culture are now exploring the potential to use this approach to help children within the kingdom gain a better understand of the factors that influence health. |
| URL | https://reflexarc.co.uk/projects/born-in-bradford |
| Description | ADR England Data Linkage Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| URL | https://www.adruk.org/ |
| Description | Age Appropriate Design Code |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://ico.org.uk/about-the-ico/news-and-events/news-and-blogs/2020/01/ico-publishes-code-of-practi... |
| Description | Andy Boyd met with the MRC Regulatory Support Unit |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or Improved professional practice |
| Description | Andy Boyd took part in a Kantar Public interview, commissioned by CLS |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or Improved professional practice |
| Impact | This PPIE work has informed the design of the CLS run pilot of the new ESRC funded birth cohort study. |
| Description | Edinburgh Study Youth Transitions & Crime: Expert Advisory Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.edinstudy.law.ed.ac.uk/ |
| Description | Electronic Vulnerability Index task force |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Description | Leading joint academic-NHS review on methods to onward share linked NHS records |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | A joint piece of work between CLOSER (led by Andy Boyd & Alison Park) and NHS Digital (led by Garry Coleman & Estelle Spence) through the NHS Digital Research Advisory Group. The work included conducting a stakeholder needs analysis amongst the longitudinal studies community (two workshops held) and a report generated. The findings are leading to a clearer and more efficient mechanisms to maximise the research value of the secondary use of routine health records in order to develop and more effective and efficient NHS. |
| URL | https://digital.nhs.uk/services/research-advisory-group |
| Description | Patients Know Best |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Patients Know Best is being successfully implemented in the NHS, with the dual ambitions of improving treatment and improving patient compliance. Mon-Williams is providing advice on whether there is read-across, both in ideas and in technical approach, to DfE's interest in concerted plans and agency for children/their carers - including solutions for GDPR-compliant means to bring together patient records from disparate sources into an encrypted, interactive app for patients to use. The relevance for the award is that this work includes children with SEND, children with behavioural challenges, children in care, children in the care of the YJB, children in mainstream EY and subsequent education. The outcome is to give insights and agency, to encourage compliance, and to join up public services around the child. |
| URL | https://patientsknowbest.com/ |
| Description | Submission to Commons Science and Technology Committee inquiry into the impact of social media and screen-use on young people's health inquiry Gave evidence to a government review |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | This project was submitted as written evidence to the House of Commons Science and Technology Committee's inquiry into the impact of social media and screen-use on young people's health, as current work that is likely to produce evidence relevant to the inquiry. |
| URL | https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-c... |
| Description | UK Strategic Framework Security Pillar |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | The UK's Strategic Framework Security Pillar working group (chaired by DfE Director of Strategy) have developed a ~£9mn HMT Shared Outcomes Fund, titled 'Data Improvement across Government' providing essential resource for further data analysis and linkage projects in the vulnerable people space. Mon-Williams is providing advice on how the following questions: How can we help the policy and operational policy functions become more intelligent, strategic and proactive customers of data and analytics? What are the key policy questions that need to be answered in 2020? |
| Description | UKRI Clean Air Programme Data Science Integration Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| URL | https://www.ukcleanair.org/projects/clean-air-framework/ |
| Description | ActEarly: a City Collaboratory approach to early promotion of good health and wellbeing |
| Amount | £49,970 (GBP) |
| Funding ID | MC_PC_18002 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2018 |
| End | 11/2018 |
| Description | ActEarly: a City Collaboratory approach to early promotion of good health and wellbeing |
| Amount | £6,600,528 (GBP) |
| Funding ID | MR/S037527/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2019 |
| End | 08/2024 |
| Description | Adolescence, digital technology and mental health care: exploring opportunity and harm. |
| Amount | £100,809 (GBP) |
| Funding ID | MR/T046716/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2020 |
| End | 03/2021 |
| Description | Avon & Somerset Police & ALSPAC: record linkage to investigate childhood adverse experiences & criminal outcomes |
| Amount | £16,928 (GBP) |
| Organisation | Avon and Somerset Constabulary |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 12/2022 |
| Description | DATAMIND: Data Hub for Mental health INformatics research Development |
| Amount | £2,031,434 (GBP) |
| Funding ID | MR/W014386/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2021 |
| End | 08/2024 |
| Description | Delivering Societal Impact through Place-Based Urban Analytics |
| Amount | £195,396 (GBP) |
| Organisation | Alan Turing Institute |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 04/2020 |
| End | 10/2021 |
| Description | Exploring community resilience assets in Wales during the COVID-19 outbreak |
| Amount | £180,000 (GBP) |
| Organisation | The Health Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 01/2022 |
| Description | Home Office / ADR UK Feasibility Study Lead Academic |
| Amount | £79,574 (GBP) |
| Funding ID | ES/V002929/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2020 |
| End | 09/2020 |
| Description | IMPETUS: Investigating Markers derived from Proteomics for Estimation of Transition from the Ultra high risk State to psychotic disorder |
| Amount | £1,122,676 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 06/2020 |
| End | 12/2023 |
| Description | LONGITUDINAL ADMINISTRATIVE DATA SPINE SCOPING PROJECT GRANT FOR THE SPF UK POPULATION LAB WAVE I |
| Amount | £236,901 (GBP) |
| Funding ID | ES/S016732/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2018 |
| End | 03/2019 |
| Description | Mapping Neurodevelopmental Trajectories for Adult Psychiatric Disorder: ALSPAC-MRI-II |
| Amount | £1,791,731 (GBP) |
| Funding ID | MR/S003436/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2019 |
| End | 02/2023 |
| Description | Mapping Neurodevelopmental Trajectories for Adult Psychiatric Disorder: ALSPAC-MRI-II |
| Amount | £1,791,731 (GBP) |
| Funding ID | MR/S003436/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2018 |
| End | 11/2022 |
| Description | Physical and mental health multimorbidity across the lifespan (LIfespaN multimorbidity research Collaborative (LINC)). |
| Amount | £3,034,322 (GBP) |
| Funding ID | MR/W014416/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2021 |
| End | 11/2025 |
| Description | TEDS 26: A longitudinal genetic approach to understanding the development and intergenerational transmission of common mental health conditions |
| Amount | £3,318,186 (GBP) |
| Funding ID | MR/V012878/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 12/2025 |
| Description | The Alan Turing Institute |
| Amount | £42,000,000 (GBP) |
| Funding ID | EP/N510129/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2015 |
| End | 03/2020 |
| Description | The impact of childhood adversity on violent crime in adolescence and early adulthood |
| Amount | £238,252 (GBP) |
| Funding ID | ES/T014393/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2020 |
| End | 06/2022 |
| Description | The long term impact of COVID-19 on mental health: comparisons between health record linkage and observed longitudinal data |
| Amount | £11,020 (GBP) |
| Funding ID | R105121-249 |
| Organisation | University of Bristol |
| Department | Elizabeth Blackwell Institute for Health Research |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 09/2020 |
| End | 08/2021 |
| Description | Using birth cohorts to understand the impact of urban green space on child health and wellbeing |
| Amount | £79,929 (GBP) |
| Funding ID | 2081026 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2018 |
| End | 03/2022 |
| Description | Using deep learning approaches to examine serious mental illness and physical multimorbidity across the life-course: from mechanisms towards novel interventions |
| Amount | £118,422 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 09/2021 |
| Description | West Yorkshire Health Care Partnership Perinatal Mental Health funding |
| Amount | £225,000 (GBP) |
| Organisation | NHS Wakefield CCG |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2020 |
| End | 12/2021 |
| Title | A Privacy-Preserving Data Management system for MRI and other Large Image Data |
| Description | ALSPAC are collecting large volumes of image data through scanning individuals at assessment clinics and also work underway as part of ALSPAC's MRC MH Pathfinder award, through linkage to images held in social media accounts. These images are individually relatively small size, but are being accessed in huge volumes - e.g. a single participants MRI scan can comprise ~12,000 separate image files. Furthermore, many images have embedded identifier values (e.g. NHS ID or name embedded in an MRI scan) or have inherently identifiable components (e.g. an individuals MRI head scan can be used to show a 3D topographic map of a persons face). This leaves study databanks with a challenge to archive large volumes of data, efficiently process them for reuse, and to de-identify them in complex ways. Through MRC MH Pathfinder, the ALSPAC Data Team and Data Linkage Team have developed an image management server with capabilities for archiving, processing and de-identification. This is built on a suite of 'open source' software packages and tuned to the needs of a longitudinal study. This new infrastructure is now operational and facilitating new research in ALSPAC. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | The tool has enabled ALSPAC to lower the charges for the processing of data for reuse from £750 per project to £300 per project. The use of the tool is supporting multiple grant applications, both in the UK and USA. The tool reduces the cost of the grant compared to previous approaches as it impacts on collection and archiving as well as reuse. E.g. Elanor Hinton application to support assessment of the impact of parenthood on maternal and paternal neurobiology and subsequent child development (ALSPAC Reference: B3386, https://proposals.epi.bristol.ac.uk/?q=node/129988). The tool is supporting the MRC funded grant led by Professor Anthony David (UCL) (ALSPAC Reference: B3035, https://proposals.epi.bristol.ac.uk/?q=node/127353). |
| Title | A pipeline to automate the production of individual Flexible Data Model (FDM) datasets |
| Description | We have prototyped and are currently testing a, pipeline to automate the production of individual Flexible Data Model (FDM) datasets within the Connected Yorkshire cloud storage platform. We have developed a python API to facilitate this pipeline - the API automatically generates master tables and updates raw data to facilitate the FDM and the proposed aim of rapidly generating cohorts. The API is designed so that it can be extended in the future to handle raw data uploads to the cloud platform and the "delta" update process for frequently updated datasets - the aim is for this automated process to streamline the many disjoint manual processes that are currently underway to generate and maintain the cohorts/datasets, and save many-many hours of work in the process. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | The development of this method is helping us drive forward discussions about connecting datasets across the whole of West Yorkshire |
| Title | Cohort Creation Library for The Observational Medical Outcomes Partnership Common Data Model |
| Description | When carrying out medical studies, a cohort of patients that are of interest for the study need to be retrieved from a database. However, this process takes an unvaried amount of time, as retrieving the correct information from a standardised database is time consuming. This is because definitions for cohorts can differ considerably, e.g. patients with chronic obstructive pulmonary disease, or children suffering from asthma. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The project has created a library that allows the creation of cohorts from a standardised medical database, the OMOP CDM, as quickly and as easily as possible from OMOP concepts and other simple cohort definitions. Analysis scripts have been created to generate summary statistics and graphs of the data, in order to outline the data as quickly as possible so that analysis can be undertaken. |
| Title | Data Access Agreement (DAA) data sharing contract |
| Description | The data access agreement is a new data sharing contract which is compatible with contemporary legislative (e.g. General Data Protection Regulations) and research governance expectations. It aligns with ALSPAC's Online Proposal System for efficient generation of specified and controlled data requests. Importantly, the DAA enables the replication of third-party data owner requirements and the addition of particular governance controls for specific datasets (e.g. geo-spatial datasets), and as such is an important element in ALSPAC's process to allow onward sharing of linked health, geo-spatial and social records. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | The DAA is a central component in ALSPAC's negotiations with NHS Digital to enable onward sharing of linked records. |
| URL | http://www.bristol.ac.uk/alspac/researchers/access/ |
| Title | Data Privacy Impact Assessment Process |
| Description | A new privacy assessment tool for ALSPAC which enables the assessment of data flows (i.e. new record linkages or new data sharing with research users) in line with EU General Data Protection Regulation requirements. The tool allows the assessment of diverse risks and particular research scenarios (e.g. the use of geocoded data in the research process, the additional sensitivities of using mental or sexual health records in research investigations. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2018 |
| Provided To Others? | No |
| Impact | Ensuring ALSPAC data sharing is legally compliant. |
| Title | UK Longitudinal Linkage Collaboration (UK LLC) |
| Description | A novel pan-UK and interdisciplinary Trusted Research Environment for longitudinal research which will host the COVID-19 relevant data of ~15 major UK longitudinal studies and systematically link the participants of these studies to health, administrative and geospatial (natural environment and neighbourhood) records. The UK LLC has a bespoke governance framework that will enable any legitimate researcher to apply for access and subsequently - if approved - gain access to a project specific sub-set of the available data within a secure analysis environment. The UK LLC is designed to be sustainable and scalable to other (non-COVID-19) use cases. It has an active public/participant involvement and engagement aspect which aims to improve the design of the resource through public involvement and to help ensure the resource is sustainable and acceptable. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | The UK LLC is a critical component of the Longitudinal Health & Wellbeing National Core Study which has been commissioned by the UK Chief Scientific Advisor in response to the COVID-19 pandemic. |
| Title | ALSPAC |
| Description | This award funded the linking of social media data in the Avon Longitudinal Study of Parents and Children, with over 900 participants agreeing to share their Twitter data with the study. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | None so far, too early |
| Title | ALSPAC 'GP' dataset of linked primary care records (1991-2018) |
| Description | These data are the coded values - relating to participant symptoms, diagnoses, treatments, care - extracted from GP primary care records of ALSPAC participants receiving care in England. The records are linked from EMIS Ltd (a GP software system company) and are managed by the ALSPAC data linkage team. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | The data are being used projects led by: 1) Professor Stan Zammit as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 2) Dr Alison Teyhan as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 3) Dr Rosie Cornish as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 4) Professor Dheeraj Rai to study Adolescent and adult mental health outcomes of autism and autistic traits (ALSPAC Reference: B2622, https://proposals.epi.bristol.ac.uk/?q=node/127702) 5) Professor Hilary Pinnock for the derivation of a clinical prediction rule for the diagnosis of asthma (ALSPAC Reference: B2830, https://proposals.epi.bristol.ac.uk/?q=node/127536) 6) Professor Sinead Langan as part of a program to establish efficient methods to understand medical and social outcomes associated with eczema (ALSPAC Reference: B2606, https://proposals.epi.bristol.ac.uk/?q=node/127717). |
| URL | http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | ALSPAC 'HES' Hospital Episode Statistics records |
| Description | These are minimum returns of Hospital Episode Statistics secondary care records of ALSPAC participants receiving care in England. The records are linked from NHS Digital and accessed under a NHS Digital - University of Bristol Data Sharing Agreement (managed by the ALSPAC data linkage team). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | The data are being used projects led by: 1) Professor Stan Zammit as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 2) Dr Alison Teyhan as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 3) Dr Rosie Cornish as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). |
| URL | http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | ALSPAC 'Looked After' and 'Children In Need' linked social care records |
| Description | These are records of children taken into state care and children classifed as 'in Need'. The records are linked from Department for Education National Pupil Database and accessed under a DfE - University of Bristol Data Sharing Agreement (managed by the ALSPAC data linkage team). While access is currently restricted to the project team, we are exploring mechanisms to widen access using the new powers of the Digital Economy Act and in partnership with the Administrative Data Research-UK. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | No |
| Impact | The data are being used in a project led by Professor John Macleod and Dr Alison Teyhan as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). This research has resulted in an academic paper: Teyhan A, Boyd A, Wijedasa D, Macleod J. Early life adversity, contact with children's social care services and educational outcomes at age 16 years: UK birth cohort study with linkage to national administrative records. BMJ open. 2019 Oct 1;9(10):e030213. We have also published a blog article emphasising the value of the novel methodologies in this research: https://www.closer.ac.uk/news-opinion/blog/filling-gaps-boosts-evidence-vulnerable-children/ |
| URL | http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | ALSPAC 'MHSDS' Data Set of Mental Health & Learning Difficulties Community Care Interactions |
| Description | These are minimum returns of Mental Health community care records of ALSPAC participants receiving care in England. The records are linked from NHS Digital and accessed under a NHS Digital - University of Bristol Data Sharing Agreement (managed by the ALSPAC data linkage team). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | The data are being used in a project led by Professor Stan Zammit as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). |
| URL | http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | ALSPAC 'STORK' dataset of linked maternity records (1990-1992) |
| Description | The ALSPAC Data Linkage team have recently (2019-2020) cleaned and documented the STORK dataset of midwifery and birth delivery records for those index participants born in either of the two main maternity hospitals in Bristol (approx. 85% of enrolled participants). These data are available for access to the bona-fide research community via the ALSPAC access mechanism. A 'Data Note' publication is being prepared to contribute documentation and to aid the discoverability of the new dataset. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | The data are being used by Dr Katie Harron (UCL) as part of her Wellcome Trust LPS (Aim 2) Award (ALSPAC reference B3002, https://proposals.epi.bristol.ac.uk/?q=node/127384). The data are being used by Dr Alison Teyhan (University of Bristol) as part of the ALSPAC Born-in-Bradford MRC MH Pathfinder award (ALSPAC reference B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). |
| URL | http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | ALSPAC UK Secure eResearch Platform for the secure analysis of sensitive data |
| Description | The ALSPAC data linkage team have worked with the UK Secure eResearch Platform team (University of Swansea) to establish an 'ALSPAC UKSeRP' secure research server and for the secure analysis of sensitive data, particularly linked routine records accessed under contract. The ALSPAC UKSeRP has been embedded in ALSPAC's linkage ethics and data sharing agreements. It has also been embedded in the study's ISO27001 certified Information Security Management System (ISMS). This is now providing the infrastructure for sharing data with bona fide users, subject to ALSPAC's project approvals process. The management of the system is governed by Standard Operating Procedures and is subject to internal and external audit assessments. We are currently in a 'Beta User' phase, once the mechanisms are fully established the resource will be promoted more widely. |
| Type Of Material | Data handling & control |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | The ALSPAC UKSeRP 'Beta User' phase is currently being used for 6 research programmes, 4 based at the University of Bristol, 1 at the University of Edinburgh and 1 at LSHTM. It is the key infrastructure for enabling the ALSPAC Born In Bradford MRC MH Pathfinder deliverables. The infrastructure is being used projects led by: 1) Professor Stan Zammit as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 2) Dr Alison Teyhan as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 3) Dr Rosie Cornish as part of the ALSPAC - Born in Bradford MRC MH Pathfinder Award (ALSPAC Reference: B3060, https://proposals.epi.bristol.ac.uk/?q=node/129688). 4) Professor Dheeraj Rai to study Adolescent and adult mental health outcomes of autism and autistic traits (ALSPAC Reference: B2622, https://proposals.epi.bristol.ac.uk/?q=node/127702) 5) Professor Hilary Pinnock for the derivation of a clinical prediction rule for the diagnosis of asthma (ALSPAC Reference: B2830, https://proposals.epi.bristol.ac.uk/?q=node/127536) 6) Professor Sinead Langan as part of a program to establish efficient methods to understand medical and social outcomes associated with eczema (ALSPAC Reference: B2606, https://proposals.epi.bristol.ac.uk/?q=node/127717). |
| URL | http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | Bradford Data Science Repository |
| Description | A combined dataset that allows Data Science to Explore and Translate the Public Service Needs in Bradford |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | The dataset is allowing our different communities (including the people who live in Bradford) to start exploring the data that describe the locality, |
| URL | https://databradford.com/ |
| Title | Connected Bradford |
| Description | We have used the award to push forward linkage of all the health and education records across Bradford. This has required a data extract from the National Pupil Database and discussions with the Department for Education (including meetings with the Director of Strategy at the DfE). We now have the permissions to undertake this linkage and this will provide one of the most comprehensive datasets linking health and education in the UK (if not the most comprehensive). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | The database will be finalised over the next few months and will then be open access (via the same mechanisms used for accessing Born in Bradford data). |
| Title | Datasets containing indices of Multiple Deprivation (IMD) and other geocoded measures (2020 refresh) |
| Description | IMD data has been linked to multiple time points, both on an annual basis (e.g., January 2008, Jan 2009, Jan 2010, etc.), as well as at the time point each child-based ALSPAC questionnaire or clinic was completed/conducted. This has been released all mother and child based data collections |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Data to enable research using geocoded SES measures to control for confounding in many different ALSPAC research investigations. Data to enable assessment of neighbourhood characteristics (e.g. urban/rural status, population density) in many different ALSPAC research investigations. |
| URL | https://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | Linkage to ALSPAC participants Twitter Social Media Posts |
| Description | ALSPAC have linked to participants social media posts held on the Twitter Platform. These posts have been downloaded to ALSPAC servers where they have been processed and used with Natural Language Processing algorithms to generate derived variables relating to Mental Health status (e.g. mood, anxiety, depression) and COVID-19 status. These derived variables are now informing applied research projects and will be accessible through the ALSPAC resource. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | This dataset is now informing applied research investigations. |
| Title | Linkage to Avon & Wiltshire Partnership Community Mental Health Care records |
| Description | Linkage to the regional, detailed, community mental health care records of ALSPAC G1 index participants through collaboration with NHS AWP Trust and UK CRIS (University of Oxford). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting a research programme and new funding looking at Mental Health during COVID-19 Pandemic: Linking observed mental health data with record linkage in ALSPAC (ALSPAC Ref: B3602), PI: Alex Kwong, University of Edinburgh. URL: https://proposals.epi.bristol.ac.uk/?q=node/130189 |
| URL | https://www.bristol.ac.uk/alspac/researchers/our-data/linkage/ |
| Title | UK Longitudinal Linkage Collaboration |
| Description | UK Longitudinal Linkage Collaboration (UK LLC) is a centralised infrastructure service for data linkage for longitudinal population studies (LPS) and a pan-UK, interdisciplinary, Trusted Research Environment (TRE) for the secure, pooled, analysis of diverse LPS data. This global first provides a national research capability for academia, policy makers and industry. UK LLC has combined data from >20 LPS with >200,000 participants. Participants' data have been linked to NHS records (primary, secondary, community care; COVID-19; civic registers; prescriptions; mental health) and geo-coded environmental exposures (pollution, green space, neighbourhood indicators). UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. UK LLC has support from >20 major UK interdisciplinary studies spanning 75 years of follow-up. These studies include many flagship MRC/Wellcome Trust studies and the ESRC priority investments: Avon Longitudinal Study of Parents and Children, ALSPAC; Born in Bradford, BiB; Centre for Longitudinal Studies (inc. National Child Development Survey NCDS58, British Cohort Study BCS70, Millennium Cohort Study MCS, Next Steps); COMPARE; English Longitudinal Study of Ageing, ELSA; European Prospective Investigation of Cancer, Epic-Norfolk; Extended Cohort for E-health, Environment and DNA, EXCEED; Fenland; Generation Scotland; Genetic Links to Anxiety and Depression, GLAD; INTERVAL; National Study of Health and Development, NHSD46; NIHR Bioresources, including STRIDES and COPING; Northern Ireland Cohort of Longitudinal Study of Ageing, NICOLA; Southall and Brent Revisited, SABRE; Track-COVID; Twins Early Development Study, TEDS; Twins UK; UK Household Longitudinal Study, Understanding Society. The development of the UK LLC was informed by precedents from ALSPAC & Born in Bradford (through the MRC support Mental Health Pathfinder project); Generation Scotland; CLOSER (through the Data Linkage programme) and through Andy Boyd's secondment to ESRC to scope the potential for using population data for inclusive longitudinal research. The UK LLC concept was further informed through input from Data Managers from across our 'vanguard group' of contributing LPS and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. There are currently 11 approved projects using UK LLC from the LHW NCS and other National Core Studies. The research from these is ongoing. There are notable methodological outputs from the UK LLC which include: (1) a novel governance structure accommodating the needs of many (n=24) UK longitudinal studies and major data owners (Eg, NHS Digital) into a common framework; (2) novel enhancements to Secure eResearch Platform data science infrastructure (Swansea University) for their Trusted Third Party to act as a 'linkage broker' and manage participants from many studies into one data processing pipeline; (3) novel enhancements to Secure eResearch Platform data science infrastructure (Swansea University) to 'record link' participants from many studies into one pooled 'super cohort' accounting for complex overlap between study membership and shared residence (ie, where participants are members of multiple studies, where occupants of a single residence are in one or more studies); (4) a transformational data pipeline to extract records of study participants from across NHS Digital records accounting for different legal bases and changes in permissions over time; (5) a novel data access process enabling a single point of application to request access to data from 24 LPS with linked records. |
| URL | https://ukllc.ac.uk/ |
| Description | ALSPAC (University of Bristol) - Twins UK (KCL) collaboration on developing linkage methodologies |
| Organisation | St Thomas' Hospital |
| Department | Twins Research Cohorts from St Thomas' Hospital |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | ALSPAC are providing strategic support to develop the TwinsUK record linkage programme based on the established and generalisable approaches developed by the 'PEARL' record linkage team. ALSPAC are specifically 1) supporting the development of the TwinsUK governance approvals based on the precedents of ALSPAC approaches; 2) supporting the development of the TwinsUK data access requests based on the precedents of ALSPAC approaches; 3) will lead the programme to secure GP assent to release copies of patients primary care records to the studies & to develop the technical mechanisms by which this will occur with practice software companies. Further to this, ALSPAC and TwinsUK will collaborate on development of aligned data processing and infrastructure and documentation/discovery developments. |
| Collaborator Contribution | Regular working meetings to develop policy and materials and to share insights. |
| Impact | In December 2019 TwinsUK received a conditional approval from the HRA Confidentiality Advisory Group to access identifiable patient information without explicit patient consent. This was based on ALSPAC's existing approvals. |
| Start Year | 2019 |
| Description | ALSPAC Linkage Team collaboration with Dr Dheeraj Rai and Mr Paul Madley-Dowd (ALSPAC Ref: B2622) |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | To provide expert contributions on data science and MH epidemiology to the project. To facilitate access to the linked health records through the MRC MH Pathfinder programme. To support Mr Paul Madley-Dowd in his PhD programme. |
| Collaborator Contribution | Facilitated access to, governance approvals of and understanding of the linked MH records. |
| Impact | Research still active. |
| Start Year | 2019 |
| Description | ALSPAC Linkage Team with Curtin University |
| Organisation | Curtin University |
| Country | Australia |
| Sector | Academic/University |
| PI Contribution | Collaboration to use Curtin developed record linkage software to link ALSPAC participants to Avon & Somerset Constabulary criminal records. |
| Collaborator Contribution | Provided software and training. |
| Impact | The Curtin record linkage software has enabled the linkage of ALSPAC with Avon & Somerset Constabulary data which is now being used in an ESRC funded research study. |
| Start Year | 2021 |
| Description | ALSPAC linkage team collaboration with Dr Beng Choon-Ho, University of Iowa Carver College of Medicine. |
| Organisation | University of Iowa |
| Department | Carver College of Medicine |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | The ALSPAC Data Linkage Team are collaborating with Dr Choon-Ho to develop funding applications to support research investigating the neurobiological mechanisms in Adolescent Marijuana Exposure and subsequent Schizophrenia Risk. This will reuse MRI data collected by ALSPAC and Collaborators Professor David and Professor Linden, it will also utilise new data management infrastructure developed by the ALSPAC MRC MH Pathfinder award. |
| Collaborator Contribution | Contributing expertise to grant applications led by Dr Choo-Ho. |
| Impact | 1) Grant application to NIHR (Not supported) "Adolescent Impulsivity, Reward Brain Networks & Schizophrenia Risk" 2) Grant application to NIHR (in progress) "Neurobiological Mechanisms in Adolescent Marijuana Exposure and Schizophrenia Risk" |
| Start Year | 2019 |
| Description | Bradford City Municipal District Council partnership |
| Organisation | Bradford Metropolitan District Council |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We are working directly with the Local Authority to ensure that the findings are used to drive policies across the District. |
| Collaborator Contribution | BCMDC are sponsoring the work through the Director of Children's Services (Mark Douglas) who is chairing the executive steering group and activating his teams to support the research. |
| Impact | We have created a series of working groups including a 'practitioner' group comprising the relevant stakeholders from across the Local Authority. |
| Start Year | 2020 |
| Description | Bristol Health Intelligence Partnership |
| Organisation | NHS South, Central and West Commissioning Support Unit |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | ALSPAC with NIHR Arc West are collaborating with the NHS South, Central West Commissioning Support Unit (NHS SCW CSU) to identify the governance and technical pathways to integrate ALSPAC data into regional health and social care data managed within the Bristol, North Somerset and South Gloucestershire Commissioning Support Unit. The objective is enable applied health research with feedback loops into local NHS care provisioning. |
| Collaborator Contribution | NHS SCW CSU have provided governance and technical expertise to help inform the governance structure and methodologies needed to realise this objective. |
| Impact | The insights from this have been distilled into a 'Blueprint' technical report. The Blueprint is now informing the development of the 'SystemWide dataset' by BNSSG Integrated Care System and is supporting the activities of the HDR UK South West Better Care partnership. |
| Start Year | 2019 |
| Description | Centre for Population Health Sciences Stanford University |
| Organisation | Stanford University |
| Department | Center for Population Health Sciences |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | We have sent staff to the Centre (e.g. Dr Liam Hill spent three months in the Center learning new data analysis techniques), and we have made data available. |
| Collaborator Contribution | The Center have sent staff across to the UK to share their learning (e.g. Dr Isabella Chu; Professor David Rehkopf; Dr Lesley Park). |
| Impact | Armstrong Carter E, Trejo S, Hill L, Crossley K, Mason D, Domingue B. 2020. The Earliest Origins of Genetic Nurture: Prenatal Environment Mediates the Association Between Maternal Genetics and Child Development. Psychological Science Multi-disciplinary: Geneticists, data scientists, educationalists and psychologists |
| Start Year | 2019 |
| Description | Collaboration between five large population based cohort studies |
| Organisation | East London Genes and Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have agreed to collaborate on a project that links our databases (ALSPAC and BiB - linked via this award) with other large population based cohorts in order to inform prediction and prevention strategies for children at genetic risk. |
| Collaborator Contribution | Cardiff University are leading on the cross-cohort collaboration with the other partners providing access to their databases (thereby enabling investigation of the relationship between genetic risk factors and later life outcomes). |
| Impact | We have submitted a grant to the MRC under the multimorbidity call. |
| Start Year | 2020 |
| Description | Collaboration between five large population based cohort studies |
| Organisation | Medical Research Council (MRC) |
| Department | MRC Centre for Neuropsychiatric Genetics and Genomics |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have agreed to collaborate on a project that links our databases (ALSPAC and BiB - linked via this award) with other large population based cohorts in order to inform prediction and prevention strategies for children at genetic risk. |
| Collaborator Contribution | Cardiff University are leading on the cross-cohort collaboration with the other partners providing access to their databases (thereby enabling investigation of the relationship between genetic risk factors and later life outcomes). |
| Impact | We have submitted a grant to the MRC under the multimorbidity call. |
| Start Year | 2020 |
| Description | Collaboration between five large population based cohort studies |
| Organisation | The Lundbeck Foundation Initiative for Integrative Psychiatric Research |
| Country | Denmark |
| Sector | Academic/University |
| PI Contribution | We have agreed to collaborate on a project that links our databases (ALSPAC and BiB - linked via this award) with other large population based cohorts in order to inform prediction and prevention strategies for children at genetic risk. |
| Collaborator Contribution | Cardiff University are leading on the cross-cohort collaboration with the other partners providing access to their databases (thereby enabling investigation of the relationship between genetic risk factors and later life outcomes). |
| Impact | We have submitted a grant to the MRC under the multimorbidity call. |
| Start Year | 2020 |
| Description | Collaboration between five large population based cohort studies |
| Organisation | UK Biobank |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We have agreed to collaborate on a project that links our databases (ALSPAC and BiB - linked via this award) with other large population based cohorts in order to inform prediction and prevention strategies for children at genetic risk. |
| Collaborator Contribution | Cardiff University are leading on the cross-cohort collaboration with the other partners providing access to their databases (thereby enabling investigation of the relationship between genetic risk factors and later life outcomes). |
| Impact | We have submitted a grant to the MRC under the multimorbidity call. |
| Start Year | 2020 |
| Description | Covid response partnership with the Centre for Population Health Sciences Stanford University |
| Organisation | Stanford Medicine |
| Country | United States |
| Sector | Hospitals |
| PI Contribution | We have hosted joint webinars to support health and education provision through the school systems in California and Yorkshire. We have brought our academic expertise and datasets to help shed light on the major factors affecting children and young people because of the pandemic. Our academics have provided research expertise to the collaboration. |
| Collaborator Contribution | They have directly funded joint research projects tackling: (i) the digital divide; (ii) food insecurity and obesity; (iii) educational inequalities; (iv) mental health. Their academics have joined our research team to provide expertise. |
| Impact | We have produced a joint report between the collaborators - a report that has been shared with our colleagues in local and central government. |
| Start Year | 2020 |
| Description | Developing statistical and qualitative methods to examine agreement between GP records and cohort study data in assessment of depression and generalised mood disorders. |
| Organisation | Bradford Institute for Health Research (BIHR) |
| Department | Born in Bradford |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Analysis of agreement between measures of maternal mood in ALSPAC data and linked GP data |
| Collaborator Contribution | Qualitative research on influences of recording of maternal mood disorder in patient records |
| Impact | No outputs yet |
| Start Year | 2019 |
| Description | Education data sharing |
| Organisation | Department for Education |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We are linking health and education data to allow the Department for Education to better understand the health barriers to learning experienced by children and young people. |
| Collaborator Contribution | The Department for Education have provided us with the education records of children across the whole of our District for the past 10 years |
| Impact | We now have the UK's only database of linked education and health records |
| Start Year | 2021 |
| Description | Egton Medical Informatics Systems (EMIS) - Development of a harmonised standard and extraction tool for primary care data into longitudinal studies. |
| Organisation | EMIS Group |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | ALSPAC with Born In Bradford and UK Biobank have established a harmonised standard for primary care data extracts optimised for longitudinal studies. EMIS Ltd are working to develop this into a clinical software grade software standard and to operationalise it in the EMIS primary care system platform (>50% market share within English GP practices). |
| Collaborator Contribution | EMIS are bringing their considerable experience of managing primary care records and developing software extraction processes and data transformations. This experience will bring technical and data quality insights to the proposed standard. EMIS will also facilitate the collection of GP assents for data collection and extraction by longitudinal studies. |
| Impact | The extraction software standard and mechanism are currently in development. |
| Start Year | 2018 |
| Description | Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk. A Wellcome Trust Consolidator Grant proposal |
| Organisation | Bradford Institute for Health Research (BIHR) |
| Department | Born in Bradford |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We will study the development of young people with elevated risk of multimorbidity (MM) in an unprecedented resource of five large longitudinal cohorts, including three multigenerational child cohorts: Avon Longitudinal Study of Parents and Children (ALSPAC) Born in Bradford Study (BiB) Integrative Psychiatric Research (iPSYCH) Study and two adult cohorts: Genes & Health (G&H) UK BioBank (UKBB) Our team will provide data from two child cohorts (ALSPAC and BiB) enhance with relevant outcome data from administrative sources through our Pathfinder award |
| Collaborator Contribution | The partnership and the cohort resources it encompasses is described above Combined these comprise ~680,296 individuals including ~104,351 young people and ~575,945 adults (of whom ~25,945 are parents of the young people). All phenotypic data have been collected and all participants have been genotyped on compatible microarray platforms. The cohorts include a wealth of data, including electronic records (Table 1) and rich phenotypic and exposure data (e.g. cognition, SEP), obtained through direct assessments and (multi-informant) questionnaires and interviews (Table 2). The ethnic and SEP diversity of our cohorts together with their different developmental stages will allow us to study the patterns and development of MM across populations. We will characterise MM trajectories in our adult cohorts and subsequently evaluate the precursors and early developmental stages of these patterns in the child cohorts, allowing us to study the mechanisms driving MM development. We will identify MM patterns in UKBB and generate hypotheses that can be tested within the other cohorts, taking advantage of differences in non-genetic risk factors between the cohorts- factors measured continuously and longitudinally. Replication of findings across markedly different samples would provide a powerful means of validation11 . We will focus on precursors (e.g., obesity, sedentary lifestyle, neurodevelopmental disorder) to a wide spectrum of health outcomes, including (but not limited to) diabetes, respiratory and cardiovascular disease, cancer, anxiety, depressive and bipolar disorder, and schizophrenia. Neurodevelopmental conditions will include developmental delay, intellectual disability, ADHD, and Autism. We will study genetic high-risk populations. We will explore how ND-CNV influence MM development, focusing on 54 ND-CNVs we have found to be robustly linked to adverse cognitive, physical and mental health outcomes3;12-14. This will help address the dearth in population-based studies of health outcomes associated with ND-CNV. With an estimated population prevalence of ND-CNV of ~2%12 we will have available close to 14,000 individuals with ND-CNV across our cohorts. PRS for physical, neurodevelopmental and mental health disorders have been or will be calculated using synchronized methods (Table 1). CNVs have already been called for all participants in iPSYCH and UKBB and all young people in ALSPAC. We will call the CNVs for all participants in BiB (young people and parents), G&H and ALSPAC parents, benefitting from the expertise and pipeline established at Cardiff University with a MRC Mental Health Data Pathfinder grant (Co-PI Walters). We will investigate propagation of MM profiles in related parents (where data available). This would be exploratory and confirmatory but can provide compelling mechanistic insights. Importantly, we will directly evaluate the extent to which our findings can be translated to the general population, providing important insights into the generalisability and wider implications of our findings. Work Streams Van den Bree and Walters will lead the Research Collaborative (Co-PIs). Our programme will be structured around six closely interlinked Work Streams (Figure 1). WS1: Physical health disorder (van Heel, Finer & Barroso, Macleod, Timpson) WS2: Neurodevelopmental and psychiatric disorder (van den Bree, Owen & Ingason, Kirov, Walters) WS3: Role of genetic factors on MM development - CNV calling, PRS calculation, cross-cohort quality control and synchronisation (Walters & Kirov, Barroso, Ingason, Finer, Owen, Timpson, van Heel, Werge). WS4: Role of non-genetic factors on MM development (Timpson, Macleod & Mon-Williams, van den Bree) WS5: Analysis and database - Cohort-specific analysis and cross-cohort harmonisation, legacy database preparation (Macleod, Holmans & Ingason, Northstone) WS6: Clinical and society implications: developmental of MM map, outreach (Owen & ALL). Aspects that require further development during a Consolidator grant The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development (see section 3. |
| Impact | We are awaiting the outcome of this grant proposal |
| Start Year | 2019 |
| Description | Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk. A Wellcome Trust Consolidator Grant proposal |
| Organisation | Cardiff University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We will study the development of young people with elevated risk of multimorbidity (MM) in an unprecedented resource of five large longitudinal cohorts, including three multigenerational child cohorts: Avon Longitudinal Study of Parents and Children (ALSPAC) Born in Bradford Study (BiB) Integrative Psychiatric Research (iPSYCH) Study and two adult cohorts: Genes & Health (G&H) UK BioBank (UKBB) Our team will provide data from two child cohorts (ALSPAC and BiB) enhance with relevant outcome data from administrative sources through our Pathfinder award |
| Collaborator Contribution | The partnership and the cohort resources it encompasses is described above Combined these comprise ~680,296 individuals including ~104,351 young people and ~575,945 adults (of whom ~25,945 are parents of the young people). All phenotypic data have been collected and all participants have been genotyped on compatible microarray platforms. The cohorts include a wealth of data, including electronic records (Table 1) and rich phenotypic and exposure data (e.g. cognition, SEP), obtained through direct assessments and (multi-informant) questionnaires and interviews (Table 2). The ethnic and SEP diversity of our cohorts together with their different developmental stages will allow us to study the patterns and development of MM across populations. We will characterise MM trajectories in our adult cohorts and subsequently evaluate the precursors and early developmental stages of these patterns in the child cohorts, allowing us to study the mechanisms driving MM development. We will identify MM patterns in UKBB and generate hypotheses that can be tested within the other cohorts, taking advantage of differences in non-genetic risk factors between the cohorts- factors measured continuously and longitudinally. Replication of findings across markedly different samples would provide a powerful means of validation11 . We will focus on precursors (e.g., obesity, sedentary lifestyle, neurodevelopmental disorder) to a wide spectrum of health outcomes, including (but not limited to) diabetes, respiratory and cardiovascular disease, cancer, anxiety, depressive and bipolar disorder, and schizophrenia. Neurodevelopmental conditions will include developmental delay, intellectual disability, ADHD, and Autism. We will study genetic high-risk populations. We will explore how ND-CNV influence MM development, focusing on 54 ND-CNVs we have found to be robustly linked to adverse cognitive, physical and mental health outcomes3;12-14. This will help address the dearth in population-based studies of health outcomes associated with ND-CNV. With an estimated population prevalence of ND-CNV of ~2%12 we will have available close to 14,000 individuals with ND-CNV across our cohorts. PRS for physical, neurodevelopmental and mental health disorders have been or will be calculated using synchronized methods (Table 1). CNVs have already been called for all participants in iPSYCH and UKBB and all young people in ALSPAC. We will call the CNVs for all participants in BiB (young people and parents), G&H and ALSPAC parents, benefitting from the expertise and pipeline established at Cardiff University with a MRC Mental Health Data Pathfinder grant (Co-PI Walters). We will investigate propagation of MM profiles in related parents (where data available). This would be exploratory and confirmatory but can provide compelling mechanistic insights. Importantly, we will directly evaluate the extent to which our findings can be translated to the general population, providing important insights into the generalisability and wider implications of our findings. Work Streams Van den Bree and Walters will lead the Research Collaborative (Co-PIs). Our programme will be structured around six closely interlinked Work Streams (Figure 1). WS1: Physical health disorder (van Heel, Finer & Barroso, Macleod, Timpson) WS2: Neurodevelopmental and psychiatric disorder (van den Bree, Owen & Ingason, Kirov, Walters) WS3: Role of genetic factors on MM development - CNV calling, PRS calculation, cross-cohort quality control and synchronisation (Walters & Kirov, Barroso, Ingason, Finer, Owen, Timpson, van Heel, Werge). WS4: Role of non-genetic factors on MM development (Timpson, Macleod & Mon-Williams, van den Bree) WS5: Analysis and database - Cohort-specific analysis and cross-cohort harmonisation, legacy database preparation (Macleod, Holmans & Ingason, Northstone) WS6: Clinical and society implications: developmental of MM map, outreach (Owen & ALL). Aspects that require further development during a Consolidator grant The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development (see section 3. |
| Impact | We are awaiting the outcome of this grant proposal |
| Start Year | 2019 |
| Description | Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk. A Wellcome Trust Consolidator Grant proposal |
| Organisation | Queen Mary University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We will study the development of young people with elevated risk of multimorbidity (MM) in an unprecedented resource of five large longitudinal cohorts, including three multigenerational child cohorts: Avon Longitudinal Study of Parents and Children (ALSPAC) Born in Bradford Study (BiB) Integrative Psychiatric Research (iPSYCH) Study and two adult cohorts: Genes & Health (G&H) UK BioBank (UKBB) Our team will provide data from two child cohorts (ALSPAC and BiB) enhance with relevant outcome data from administrative sources through our Pathfinder award |
| Collaborator Contribution | The partnership and the cohort resources it encompasses is described above Combined these comprise ~680,296 individuals including ~104,351 young people and ~575,945 adults (of whom ~25,945 are parents of the young people). All phenotypic data have been collected and all participants have been genotyped on compatible microarray platforms. The cohorts include a wealth of data, including electronic records (Table 1) and rich phenotypic and exposure data (e.g. cognition, SEP), obtained through direct assessments and (multi-informant) questionnaires and interviews (Table 2). The ethnic and SEP diversity of our cohorts together with their different developmental stages will allow us to study the patterns and development of MM across populations. We will characterise MM trajectories in our adult cohorts and subsequently evaluate the precursors and early developmental stages of these patterns in the child cohorts, allowing us to study the mechanisms driving MM development. We will identify MM patterns in UKBB and generate hypotheses that can be tested within the other cohorts, taking advantage of differences in non-genetic risk factors between the cohorts- factors measured continuously and longitudinally. Replication of findings across markedly different samples would provide a powerful means of validation11 . We will focus on precursors (e.g., obesity, sedentary lifestyle, neurodevelopmental disorder) to a wide spectrum of health outcomes, including (but not limited to) diabetes, respiratory and cardiovascular disease, cancer, anxiety, depressive and bipolar disorder, and schizophrenia. Neurodevelopmental conditions will include developmental delay, intellectual disability, ADHD, and Autism. We will study genetic high-risk populations. We will explore how ND-CNV influence MM development, focusing on 54 ND-CNVs we have found to be robustly linked to adverse cognitive, physical and mental health outcomes3;12-14. This will help address the dearth in population-based studies of health outcomes associated with ND-CNV. With an estimated population prevalence of ND-CNV of ~2%12 we will have available close to 14,000 individuals with ND-CNV across our cohorts. PRS for physical, neurodevelopmental and mental health disorders have been or will be calculated using synchronized methods (Table 1). CNVs have already been called for all participants in iPSYCH and UKBB and all young people in ALSPAC. We will call the CNVs for all participants in BiB (young people and parents), G&H and ALSPAC parents, benefitting from the expertise and pipeline established at Cardiff University with a MRC Mental Health Data Pathfinder grant (Co-PI Walters). We will investigate propagation of MM profiles in related parents (where data available). This would be exploratory and confirmatory but can provide compelling mechanistic insights. Importantly, we will directly evaluate the extent to which our findings can be translated to the general population, providing important insights into the generalisability and wider implications of our findings. Work Streams Van den Bree and Walters will lead the Research Collaborative (Co-PIs). Our programme will be structured around six closely interlinked Work Streams (Figure 1). WS1: Physical health disorder (van Heel, Finer & Barroso, Macleod, Timpson) WS2: Neurodevelopmental and psychiatric disorder (van den Bree, Owen & Ingason, Kirov, Walters) WS3: Role of genetic factors on MM development - CNV calling, PRS calculation, cross-cohort quality control and synchronisation (Walters & Kirov, Barroso, Ingason, Finer, Owen, Timpson, van Heel, Werge). WS4: Role of non-genetic factors on MM development (Timpson, Macleod & Mon-Williams, van den Bree) WS5: Analysis and database - Cohort-specific analysis and cross-cohort harmonisation, legacy database preparation (Macleod, Holmans & Ingason, Northstone) WS6: Clinical and society implications: developmental of MM map, outreach (Owen & ALL). Aspects that require further development during a Consolidator grant The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development (see section 3. |
| Impact | We are awaiting the outcome of this grant proposal |
| Start Year | 2019 |
| Description | Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk. A Wellcome Trust Consolidator Grant proposal |
| Organisation | University of Bristol |
| Department | Avon Longitudinal Study of Parents and Children (ALSPAC) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We will study the development of young people with elevated risk of multimorbidity (MM) in an unprecedented resource of five large longitudinal cohorts, including three multigenerational child cohorts: Avon Longitudinal Study of Parents and Children (ALSPAC) Born in Bradford Study (BiB) Integrative Psychiatric Research (iPSYCH) Study and two adult cohorts: Genes & Health (G&H) UK BioBank (UKBB) Our team will provide data from two child cohorts (ALSPAC and BiB) enhance with relevant outcome data from administrative sources through our Pathfinder award |
| Collaborator Contribution | The partnership and the cohort resources it encompasses is described above Combined these comprise ~680,296 individuals including ~104,351 young people and ~575,945 adults (of whom ~25,945 are parents of the young people). All phenotypic data have been collected and all participants have been genotyped on compatible microarray platforms. The cohorts include a wealth of data, including electronic records (Table 1) and rich phenotypic and exposure data (e.g. cognition, SEP), obtained through direct assessments and (multi-informant) questionnaires and interviews (Table 2). The ethnic and SEP diversity of our cohorts together with their different developmental stages will allow us to study the patterns and development of MM across populations. We will characterise MM trajectories in our adult cohorts and subsequently evaluate the precursors and early developmental stages of these patterns in the child cohorts, allowing us to study the mechanisms driving MM development. We will identify MM patterns in UKBB and generate hypotheses that can be tested within the other cohorts, taking advantage of differences in non-genetic risk factors between the cohorts- factors measured continuously and longitudinally. Replication of findings across markedly different samples would provide a powerful means of validation11 . We will focus on precursors (e.g., obesity, sedentary lifestyle, neurodevelopmental disorder) to a wide spectrum of health outcomes, including (but not limited to) diabetes, respiratory and cardiovascular disease, cancer, anxiety, depressive and bipolar disorder, and schizophrenia. Neurodevelopmental conditions will include developmental delay, intellectual disability, ADHD, and Autism. We will study genetic high-risk populations. We will explore how ND-CNV influence MM development, focusing on 54 ND-CNVs we have found to be robustly linked to adverse cognitive, physical and mental health outcomes3;12-14. This will help address the dearth in population-based studies of health outcomes associated with ND-CNV. With an estimated population prevalence of ND-CNV of ~2%12 we will have available close to 14,000 individuals with ND-CNV across our cohorts. PRS for physical, neurodevelopmental and mental health disorders have been or will be calculated using synchronized methods (Table 1). CNVs have already been called for all participants in iPSYCH and UKBB and all young people in ALSPAC. We will call the CNVs for all participants in BiB (young people and parents), G&H and ALSPAC parents, benefitting from the expertise and pipeline established at Cardiff University with a MRC Mental Health Data Pathfinder grant (Co-PI Walters). We will investigate propagation of MM profiles in related parents (where data available). This would be exploratory and confirmatory but can provide compelling mechanistic insights. Importantly, we will directly evaluate the extent to which our findings can be translated to the general population, providing important insights into the generalisability and wider implications of our findings. Work Streams Van den Bree and Walters will lead the Research Collaborative (Co-PIs). Our programme will be structured around six closely interlinked Work Streams (Figure 1). WS1: Physical health disorder (van Heel, Finer & Barroso, Macleod, Timpson) WS2: Neurodevelopmental and psychiatric disorder (van den Bree, Owen & Ingason, Kirov, Walters) WS3: Role of genetic factors on MM development - CNV calling, PRS calculation, cross-cohort quality control and synchronisation (Walters & Kirov, Barroso, Ingason, Finer, Owen, Timpson, van Heel, Werge). WS4: Role of non-genetic factors on MM development (Timpson, Macleod & Mon-Williams, van den Bree) WS5: Analysis and database - Cohort-specific analysis and cross-cohort harmonisation, legacy database preparation (Macleod, Holmans & Ingason, Northstone) WS6: Clinical and society implications: developmental of MM map, outreach (Owen & ALL). Aspects that require further development during a Consolidator grant The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development (see section 3. |
| Impact | We are awaiting the outcome of this grant proposal |
| Start Year | 2019 |
| Description | Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk. A Wellcome Trust Consolidator Grant proposal |
| Organisation | University of Copenhagen |
| Country | Denmark |
| Sector | Academic/University |
| PI Contribution | We will study the development of young people with elevated risk of multimorbidity (MM) in an unprecedented resource of five large longitudinal cohorts, including three multigenerational child cohorts: Avon Longitudinal Study of Parents and Children (ALSPAC) Born in Bradford Study (BiB) Integrative Psychiatric Research (iPSYCH) Study and two adult cohorts: Genes & Health (G&H) UK BioBank (UKBB) Our team will provide data from two child cohorts (ALSPAC and BiB) enhance with relevant outcome data from administrative sources through our Pathfinder award |
| Collaborator Contribution | The partnership and the cohort resources it encompasses is described above Combined these comprise ~680,296 individuals including ~104,351 young people and ~575,945 adults (of whom ~25,945 are parents of the young people). All phenotypic data have been collected and all participants have been genotyped on compatible microarray platforms. The cohorts include a wealth of data, including electronic records (Table 1) and rich phenotypic and exposure data (e.g. cognition, SEP), obtained through direct assessments and (multi-informant) questionnaires and interviews (Table 2). The ethnic and SEP diversity of our cohorts together with their different developmental stages will allow us to study the patterns and development of MM across populations. We will characterise MM trajectories in our adult cohorts and subsequently evaluate the precursors and early developmental stages of these patterns in the child cohorts, allowing us to study the mechanisms driving MM development. We will identify MM patterns in UKBB and generate hypotheses that can be tested within the other cohorts, taking advantage of differences in non-genetic risk factors between the cohorts- factors measured continuously and longitudinally. Replication of findings across markedly different samples would provide a powerful means of validation11 . We will focus on precursors (e.g., obesity, sedentary lifestyle, neurodevelopmental disorder) to a wide spectrum of health outcomes, including (but not limited to) diabetes, respiratory and cardiovascular disease, cancer, anxiety, depressive and bipolar disorder, and schizophrenia. Neurodevelopmental conditions will include developmental delay, intellectual disability, ADHD, and Autism. We will study genetic high-risk populations. We will explore how ND-CNV influence MM development, focusing on 54 ND-CNVs we have found to be robustly linked to adverse cognitive, physical and mental health outcomes3;12-14. This will help address the dearth in population-based studies of health outcomes associated with ND-CNV. With an estimated population prevalence of ND-CNV of ~2%12 we will have available close to 14,000 individuals with ND-CNV across our cohorts. PRS for physical, neurodevelopmental and mental health disorders have been or will be calculated using synchronized methods (Table 1). CNVs have already been called for all participants in iPSYCH and UKBB and all young people in ALSPAC. We will call the CNVs for all participants in BiB (young people and parents), G&H and ALSPAC parents, benefitting from the expertise and pipeline established at Cardiff University with a MRC Mental Health Data Pathfinder grant (Co-PI Walters). We will investigate propagation of MM profiles in related parents (where data available). This would be exploratory and confirmatory but can provide compelling mechanistic insights. Importantly, we will directly evaluate the extent to which our findings can be translated to the general population, providing important insights into the generalisability and wider implications of our findings. Work Streams Van den Bree and Walters will lead the Research Collaborative (Co-PIs). Our programme will be structured around six closely interlinked Work Streams (Figure 1). WS1: Physical health disorder (van Heel, Finer & Barroso, Macleod, Timpson) WS2: Neurodevelopmental and psychiatric disorder (van den Bree, Owen & Ingason, Kirov, Walters) WS3: Role of genetic factors on MM development - CNV calling, PRS calculation, cross-cohort quality control and synchronisation (Walters & Kirov, Barroso, Ingason, Finer, Owen, Timpson, van Heel, Werge). WS4: Role of non-genetic factors on MM development (Timpson, Macleod & Mon-Williams, van den Bree) WS5: Analysis and database - Cohort-specific analysis and cross-cohort harmonisation, legacy database preparation (Macleod, Holmans & Ingason, Northstone) WS6: Clinical and society implications: developmental of MM map, outreach (Owen & ALL). Aspects that require further development during a Consolidator grant The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development (see section 3. |
| Impact | We are awaiting the outcome of this grant proposal |
| Start Year | 2019 |
| Description | Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk. A Wellcome Trust Consolidator Grant proposal |
| Organisation | University of Exeter |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We will study the development of young people with elevated risk of multimorbidity (MM) in an unprecedented resource of five large longitudinal cohorts, including three multigenerational child cohorts: Avon Longitudinal Study of Parents and Children (ALSPAC) Born in Bradford Study (BiB) Integrative Psychiatric Research (iPSYCH) Study and two adult cohorts: Genes & Health (G&H) UK BioBank (UKBB) Our team will provide data from two child cohorts (ALSPAC and BiB) enhance with relevant outcome data from administrative sources through our Pathfinder award |
| Collaborator Contribution | The partnership and the cohort resources it encompasses is described above Combined these comprise ~680,296 individuals including ~104,351 young people and ~575,945 adults (of whom ~25,945 are parents of the young people). All phenotypic data have been collected and all participants have been genotyped on compatible microarray platforms. The cohorts include a wealth of data, including electronic records (Table 1) and rich phenotypic and exposure data (e.g. cognition, SEP), obtained through direct assessments and (multi-informant) questionnaires and interviews (Table 2). The ethnic and SEP diversity of our cohorts together with their different developmental stages will allow us to study the patterns and development of MM across populations. We will characterise MM trajectories in our adult cohorts and subsequently evaluate the precursors and early developmental stages of these patterns in the child cohorts, allowing us to study the mechanisms driving MM development. We will identify MM patterns in UKBB and generate hypotheses that can be tested within the other cohorts, taking advantage of differences in non-genetic risk factors between the cohorts- factors measured continuously and longitudinally. Replication of findings across markedly different samples would provide a powerful means of validation11 . We will focus on precursors (e.g., obesity, sedentary lifestyle, neurodevelopmental disorder) to a wide spectrum of health outcomes, including (but not limited to) diabetes, respiratory and cardiovascular disease, cancer, anxiety, depressive and bipolar disorder, and schizophrenia. Neurodevelopmental conditions will include developmental delay, intellectual disability, ADHD, and Autism. We will study genetic high-risk populations. We will explore how ND-CNV influence MM development, focusing on 54 ND-CNVs we have found to be robustly linked to adverse cognitive, physical and mental health outcomes3;12-14. This will help address the dearth in population-based studies of health outcomes associated with ND-CNV. With an estimated population prevalence of ND-CNV of ~2%12 we will have available close to 14,000 individuals with ND-CNV across our cohorts. PRS for physical, neurodevelopmental and mental health disorders have been or will be calculated using synchronized methods (Table 1). CNVs have already been called for all participants in iPSYCH and UKBB and all young people in ALSPAC. We will call the CNVs for all participants in BiB (young people and parents), G&H and ALSPAC parents, benefitting from the expertise and pipeline established at Cardiff University with a MRC Mental Health Data Pathfinder grant (Co-PI Walters). We will investigate propagation of MM profiles in related parents (where data available). This would be exploratory and confirmatory but can provide compelling mechanistic insights. Importantly, we will directly evaluate the extent to which our findings can be translated to the general population, providing important insights into the generalisability and wider implications of our findings. Work Streams Van den Bree and Walters will lead the Research Collaborative (Co-PIs). Our programme will be structured around six closely interlinked Work Streams (Figure 1). WS1: Physical health disorder (van Heel, Finer & Barroso, Macleod, Timpson) WS2: Neurodevelopmental and psychiatric disorder (van den Bree, Owen & Ingason, Kirov, Walters) WS3: Role of genetic factors on MM development - CNV calling, PRS calculation, cross-cohort quality control and synchronisation (Walters & Kirov, Barroso, Ingason, Finer, Owen, Timpson, van Heel, Werge). WS4: Role of non-genetic factors on MM development (Timpson, Macleod & Mon-Williams, van den Bree) WS5: Analysis and database - Cohort-specific analysis and cross-cohort harmonisation, legacy database preparation (Macleod, Holmans & Ingason, Northstone) WS6: Clinical and society implications: developmental of MM map, outreach (Owen & ALL). Aspects that require further development during a Consolidator grant The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development The grant will allow us to develop our teams and refine our research strategy. A number of us have worked together previously but we will use the six months to identify how we can grow the network. We will develop our cross-cohort data catalogue, and refine our strategies for CNV calling and PRS calculation. We will agree on data analysis strategies and the processes we will follow for legacy database development (see section 3. |
| Impact | We are awaiting the outcome of this grant proposal |
| Start Year | 2019 |
| Description | MHCLG partnership on use of data to take a place based approach to service delivery |
| Organisation | Ministry of Housing, Communities and Local Government |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | 1. Interrogated, mapped, modelled and helped better understand future service demands and the interactions with other public service providers in managing shifting and emergent vulnerabilities. 2. Helping to improve understanding and shape how public sector agencies and partners can effectively respond to and prevent future threat, harm and vulnerability through integrated multi-sectorial partnerships. |
| Collaborator Contribution | Provided funding for community engagement team. More generally, helped establish a wider network of public services and technological provision, and use of practice-based implementation, innovation and experimentation to effect national and international change through linking the research with the work in the People, Places & Communities Team at MHCLG. |
| Impact | The partnership has enabled an exciting, new conversation about implementing change across public sector organisations and how they work effectively across disciplinary and professional silos to enhance preventive capabilities. |
| Start Year | 2021 |
| Description | MHCLG partnership on use of data to take a place based approach to service delivery |
| Organisation | Ministry of Housing, Communities and Local Government |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | 1. Interrogated, mapped, modelled and helped better understand future service demands and the interactions with other public service providers in managing shifting and emergent vulnerabilities. 2. Helping to improve understanding and shape how public sector agencies and partners can effectively respond to and prevent future threat, harm and vulnerability through integrated multi-sectorial partnerships. |
| Collaborator Contribution | Provided funding for community engagement team. More generally, helped establish a wider network of public services and technological provision, and use of practice-based implementation, innovation and experimentation to effect national and international change through linking the research with the work in the People, Places & Communities Team at MHCLG. |
| Impact | The partnership has enabled an exciting, new conversation about implementing change across public sector organisations and how they work effectively across disciplinary and professional silos to enhance preventive capabilities. |
| Start Year | 2021 |
| Description | Multimorbidity prediction work |
| Organisation | Queen Mary University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Co-I on grant application |
| Collaborator Contribution | Co-leading grant application (with Golam Khandaker at University of Bristol) |
| Impact | Successful grant application |
| Start Year | 2020 |
| Description | Partnership with UC Berkeley |
| Organisation | University of California, Berkeley |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | Professor Mon-Williams held a meeting with Chancellor Christ to agree to a formal partnership between UC Berkeley and the Wolfson Centres of Applied Research (Directed by Professor John Wright - PI of BIB and co-applicant on this grant). The meeting was attended by Sir Alan Langlands (VC University of Leeds) and Professor Lisa Roberts (DVC University of Leeds). |
| Collaborator Contribution | UC Berkeley have created a staff and student exchange (based around the work undertaken in Bradford on data linkage and using data science to improve life outcomes for children). |
| Impact | A University Academic Fellow and PhD student from UC Berkeley are now working within the Wolfson Centres in Bradford. |
| Start Year | 2019 |
| Description | Prediction modelling |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Initiated collaboration to strengthen the science of project and to help identify relevant datasets for validation. Leading a grant application (S.Sullivan PI. D.Kounali co-I) |
| Collaborator Contribution | Sharing expertise and will co-author publications. Co-applicants on grant. |
| Impact | None as yet. Still too early |
| Start Year | 2019 |
| Description | Prediction modelling |
| Organisation | University of Cambridge |
| Department | Cambridge Neuroscience |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Initiated collaboration to strengthen the science of project and to help identify relevant datasets for validation. |
| Collaborator Contribution | Sharing expertise and will co-author publications. |
| Impact | None as yet. Still too early |
| Start Year | 2019 |
| Description | Prediction modelling - RCSI |
| Organisation | Royal College of Surgeons in Ireland |
| Country | Ireland |
| Sector | Academic/University |
| PI Contribution | Initiated collaboration to strengthen the science of project. Co-investigator on grant application |
| Collaborator Contribution | Sharing expertise and will co-author publications. Leading grant application |
| Impact | None yet, too early |
| Start Year | 2018 |
| Description | Prediction modelling - TRC |
| Organisation | National Institute for Health Research |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Initiated collaboration to help identify relevant datasets for validation. |
| Collaborator Contribution | Sharing knowledge of existing datasets |
| Impact | None yet, too early |
| Start Year | 2019 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | Cardiff University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychological Health dAta SciencE (PHASE), a Mental Health Data Hub |
| Organisation | University of Glasgow |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Innovation 3: Enhancing cohorts Lead: Macleod, Boyd. Collaborators: Background: Building on both the Bristol MRC Pathfinder and the UK Longitudinal Linkage Collaboration (LLC) infrastructural component of the Longitudinal Health and Wealth Covid-19 National Core Study (LH&W NCS, led by Professor Nishi Chaturvedi) we will provide a national, open, readily discoverable, supported access integrated data resource of longitudinal population studies (LPS) enhanced by linkage to health and social records. The LH&W NCS is establishing a centralised, responsive research resource by combining a diverse range of high value data assets for the investigation into high priority COVID-19 (C-19) research questions. These data assets include established LPS, clinical studies and C-19 volunteer studies from across the UK, in addition to whole-population health and social records. LPS-collected sources of data include biological sample collections, genomic data and in-depth and self-reported measures of health and wellbeing collected before and after C-19. By using a group of LPS, the UK LLC includes data from volunteers of all ages, social backgrounds and ethnicities and provides significant geographical coverage of the UK. Though created in response to the pandemic and constructed to enable questions related to C-19 (risk, prognosis and collateral effects of mitigation measures) to be answered, this national research resource has wider utility and will be sustained in the post-pandemic period. Detailed measures of social position, and possible influences on mental health outcomes are captured and C-19 related mental health outcomes are already being studied. Building on our Pathfinder experience, we will create code libraries and extraction routines to extract research ready mental health outcomes from both LPS and administrative data to enable future studies including those not directly related to the pandemic. This model allows the investigation of associations identified in whole population records through deep-dive analysis of rich LPS data. The UK LLC is combining data assets from 15 major inter-disciplinary UK LPS and utilising these alongside the UK Biobank, the Zoe Symptom Tracker cohort and potentially other relevant sources. Through this the UK LLC is establishing a longitudinal linkage platform to host these data assets within a secure environment and link in novel data collection. Aligned with this, national datasets are used to assess coverage, bias and representation within the sum population of the contributing studies. The UK LLC leverages infrastructure and governance components established by the Health Data Research UK (HDRUK) programme and Administrative Data Research UK (ADRUK)/Office for National Statistics (ONS), Open Safely and the extensive coordination and involvement of the LPS community. |
| Collaborator Contribution | Vision: PHASE will transform mental health research in the UK by creating a world leading data infrastructure with Findable, Accessible, Interoperable, and Reusable (FAIR) mental health rich datasets; providing expertise and developing capacity to support their responsible use in mental health research and innovation across the NHS, academia and industry with embedded patient and public participation. We will advance mental health research through a step change in visibility and accessibility to NHS, administrative and longitudinal datasets through greater discoverability, annotation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need. Data reproducibility and harmonisation will be key, as will the need for solutions to be platform-agnostic. This data Hub and the expertise represented in our multi-site collaboration will promote interdisciplinarity, robustness and excellence in mental health research and ensure ground-breaking innovation in partnership with patients, people with lived experience, charities, industry and the wider public. Together, we will facilitate responsible and well-governed research practice for public benefit. Our consortium brings together eight of the nine MRC Mental Health 'Pathfinder' awards (King's, Swansea, Cardiff, Bristol, UCL, Cambridge, Glasgow, Edinburgh) including seven Principal Investigators of said awards (Stewart, John, McIntosh, Macleod, Osborn, Cardinal, Smith) placing it in a unique position to 'road build' on the valuable developments and collaborations of the last two years. It further incorporates geographically complementary sites at Manchester and Belfast, and additional expertise in data discoverability (Arseneault) and training and capacity development (Shenow, MQ). All of the contributing leads, co-investigators and many stakeholders are already linked through the MQ Data Science Group, providing our application with the relationships and networks necessary to facilitate new collaborations, develop existing and new data resources and methods and make tangible progress within the first 3 and 18 months of an award (Milestone1 and Milestone 2). Objectives: 1. To make datasets available securely for research, development and innovation across Industry, Academia and the NHS 2. To curate and enhance the interoperability of data for research, development and innovation across Industry, Academia and the NHS 3. To develop global standards to meet industrial research and development needs 4. Capacity development of the workforce, including training and development of early career researchers 5. To embed patient and public participation in the development of the Hub to ensure that it is driven by the needs of the population and considers key ethical issues pertinent to mental health data |
| Impact | None yet |
| Start Year | 2021 |
| Description | Psychosis prediction (KCL) |
| Organisation | King's College London |
| Department | Institute of Psychiatry, Psychology & Neuroscience |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Agreed to share prediction model to test in KCL-held data |
| Collaborator Contribution | Agreed to test prediction model as external validation |
| Impact | None as yet |
| Start Year | 2020 |
| Description | The Reading Model (Thames Valley Police & Public Health England Data Intelligence Network) |
| Organisation | Public Health England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Thames Valley Police (Superintendent Stan Gilmour: Head of Violence Reduction, Thames Valley Police) and Public Health England (Dr Éamonn O'Moore: National lead health and justice team, PHE) have established a national data intelligence network called 'The Reading Model'. ALSPAC have contributed in order to provide research and data resource insights; to promote the ALSPAC database as a resource for studying criminal justice outcomes; and the interaction between criminality and mental health; and to further our research program to collect criminal justice self-report and linked records. |
| Collaborator Contribution | Attendance and contributions to workshops and working groups. |
| Impact | 1) Thames Valley Police and PHE supported ALSPAC led application to ESRC for funding to support criminal justice (particularly violent crime) research programme (under review) 2) Thames Valley Police and PHE supported ALSPAC work to engage Avon & Somerset Constabulary to develop a data sharing agreement for linking cohort data to their police outcomes data (project underway) 3) We have developed a working relationship with the Edinburgh Study of Youth Transition and Crime considering how to develop prospectively harmonised data collection and cross-cohort analysis. |
| Start Year | 2018 |
| Description | The Reading Model (Thames Valley Police & Public Health England Data Intelligence Network) |
| Organisation | Thames Valley Police |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Thames Valley Police (Superintendent Stan Gilmour: Head of Violence Reduction, Thames Valley Police) and Public Health England (Dr Éamonn O'Moore: National lead health and justice team, PHE) have established a national data intelligence network called 'The Reading Model'. ALSPAC have contributed in order to provide research and data resource insights; to promote the ALSPAC database as a resource for studying criminal justice outcomes; and the interaction between criminality and mental health; and to further our research program to collect criminal justice self-report and linked records. |
| Collaborator Contribution | Attendance and contributions to workshops and working groups. |
| Impact | 1) Thames Valley Police and PHE supported ALSPAC led application to ESRC for funding to support criminal justice (particularly violent crime) research programme (under review) 2) Thames Valley Police and PHE supported ALSPAC work to engage Avon & Somerset Constabulary to develop a data sharing agreement for linking cohort data to their police outcomes data (project underway) 3) We have developed a working relationship with the Edinburgh Study of Youth Transition and Crime considering how to develop prospectively harmonised data collection and cross-cohort analysis. |
| Start Year | 2018 |
| Description | The Reading Model (Thames Valley Police & Public Health England Data Intelligence Network) |
| Organisation | University of Edinburgh |
| Department | Edinburgh Study of Youth Transitions and Crime |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Thames Valley Police (Superintendent Stan Gilmour: Head of Violence Reduction, Thames Valley Police) and Public Health England (Dr Éamonn O'Moore: National lead health and justice team, PHE) have established a national data intelligence network called 'The Reading Model'. ALSPAC have contributed in order to provide research and data resource insights; to promote the ALSPAC database as a resource for studying criminal justice outcomes; and the interaction between criminality and mental health; and to further our research program to collect criminal justice self-report and linked records. |
| Collaborator Contribution | Attendance and contributions to workshops and working groups. |
| Impact | 1) Thames Valley Police and PHE supported ALSPAC led application to ESRC for funding to support criminal justice (particularly violent crime) research programme (under review) 2) Thames Valley Police and PHE supported ALSPAC work to engage Avon & Somerset Constabulary to develop a data sharing agreement for linking cohort data to their police outcomes data (project underway) 3) We have developed a working relationship with the Edinburgh Study of Youth Transition and Crime considering how to develop prospectively harmonised data collection and cross-cohort analysis. |
| Start Year | 2018 |
| Title | A longitudinal extraction framework and standard for electronic primary care records |
| Description | Using CLOSER cohort consortium innovation funding Andy Boyd led a group of longitudinal studies (including Born in Bradford and UK Biobank) to develop a standardised framework for longitudinal extracts of electronic primary care records (being prepared for publication). Through 'Cohorts as Platforms for Mental Health research (CaP:MH) ALSPAC and Born in Bradford are working with EMIS Ltd (the English market leading software provider for General Practices') to use this framework to develop and extraction standard (which will be published as open source in the public domain). This standard will then be realised by EMIS Ltd as a proprietary software product (owned by EMIS Ltd) to link and extract longitudinal copies of participants records in an efficient, accurate, secure and transparent manner. |
| Type Of Technology | Software |
| Year Produced | 2018 |
| Open Source License? | Yes |
| Impact | It is intended that this product will provide an efficient and consistent extraction pipeline which will generate consistent outputs which will can be harmonised and used in cross-cohort studies. |
| Title | Social media linkage software |
| Description | The software facilitates the secure linkage and sharing of information derived from social media data in UK birth cohorts. |
| Type Of Technology | Software |
| Year Produced | 2019 |
| Open Source License? | Yes |
| Impact | This software facilitates the secure linkage and sharing of information derived from social media data in UK birth cohorts, providing high-resolution time series data on participants' real-life social interactions that can be processed to provide anonymised datasets available to researchers. This enriches the data available to cohorts, but also facilitates the improvement of algorithms for inferring information from social media data through linkage to high quality ground truth data in well characterised epidemiological cohorts. |
| URL | https://github.com/DynamicGenetics/Epicosm |
| Title | Social media linkage software |
| Description | This project funded the development of easy to use open source software to facilitate the secure linkage of social media data in UK birth cohorts. |
| Type Of Technology | Software |
| Year Produced | 2019 |
| Open Source License? | Yes |
| Impact | This software will facilitate the secure linkage of social media data in UK birth cohorts, providing high-resolution time series data on participants' real-life social interactions that will be processed to provide anonymised datasets available to researchers. |
| Description | 2020 Yorkshire and the Humber School of Paediatrics Annual Conference |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Provided overview of the ActEarly: Holme Wood methodology and the connections between BiB and ALSPAC to the Regional paediatricians. This opened up discussions about how data science can be used to improve paediatric care which has lead to a number of paediatricians supporting the work around the electronic vulnerability index. |
| Year(s) Of Engagement Activity | 2020 |
| Description | ADR England Data Linkage Steering Group. Administrative Data Research UK |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Contributed to advisory body |
| Year(s) Of Engagement Activity | 2021 |
| Description | Act Early: Holme Wood Community Meals |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | The events bring together community members, data scientists, practitioners and senior policy makers (from local and central government). The events result in new commissioning of services (e.g. health) and the co-production of solutions to problems identified by the community. |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | An Introduction to the ALSPAC resource: a multi-generation study spanning a quarter of a century (Invited Presentation) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd was invited to visit the CHILD birth cohort study (Manitoba, Canada) and present about the ALSPAC cohort in order to raise awareness of the study and foster cross-cohort links. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://childstudy.ca |
| Description | Arts Council England discussion about collaboration opportunities |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presented to Dr Darren Henley, OBE and Sir Nick Serota on the role of culture in improving health outcomes for children and young people, and the opportunities to become involved in the research. We are now exploring a collaboration between ACE and the ActEarly: Holme Wood work - utilising the datasets from Born in Bradford and ALSPAC. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Born in Bradford Science Festival 2019 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We held a Festival to celebrate the achievements of Born in Bradford (Sir Jeremy Farrar, Director of Wellcome, was our keynote speaker). We had over 500 practitioners and participants coming together to discuss who we could create whole system change to improve mental health for children across the Region and then use this learning to drive National change. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://borninbradford.nhs.uk/news-events/events/bib-scientific-festival/ |
| Description | Bradford Opportunity Area Knowledge Transfer Event |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Knowledge transfer event across 12 Department for Education Opportunity Areas sharing activity led by the University of Leeds across Bradford. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Bradford Science Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | We provided a number of stalls (with interactive experiences) and talks aimed at helping the public understand the importance of longitudinal research. We highlighted findings from ALSPAC and Born in Bradford and we promoted healthy living. |
| Year(s) Of Engagement Activity | 2018,2019 |
| URL | https://www.scienceandmediamuseum.org.uk/what-was-on/bradford-science-festival-2019 |
| Description | CLOSER Data Linkage Community of Practice Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd chairs the CLOSER Data Linkage Community of Practice Group. This group is designed to share insights relating to data linkage amongst those working in this field in longitudinal research. The group also seeks to jointly identify mechanisms to address common barriers to linkages or to develop improved ways of working. The following studies/organisations are currently represented on the working group: 1946 National Survey of Health and Development; the 1958, 1970 and 2000-01 birth cohorts; the Avon Longitudinal Study of Parents and Children; Born in Bradford; British Regional Heart Study; Department for Education; Generations Study; Hertfordshire Cohort Study; Health and Employment After Fifty Study; Million Women's Study; Growing Up in Scotland; Northern Ireland Cohort for the Longitudinal Study of Ageing; Southampton Women's Survey; Twins UK; UK Womens Cohort Study; and Understanding Society. |
| Year(s) Of Engagement Activity | 2019,2020,2021 |
| URL | https://www.closer.ac.uk/our-networks/ |
| Description | Children of the 2020s: Scientific Advisory Group. Department for Education |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Contributed as a scientific advisor with a focus on providing expertise on record linkages in longitudinal studies. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Curiosity toolkit for Bristol's We The Curious science centre. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | This award funded the development of a public engagement activity that will form part of the programme of We The Curious over an initial period of three years. The activity has been developed in partnership with the Alan Turing Institute and Microsoft Research and explores the question "can machines understand emotion?". It introduces visitors to how artificial intelligence can inform our understanding of mental health. |
| Year(s) Of Engagement Activity | 2019,2020 |
| Description | Designing a framework for extraction Primary Care electronic records for longitudinal population studies |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | With support from the CLOSER cohort consortium (Work Package 14) we have established an expert working group of data managers from longitudinal population studies. The exert working group is designing a framework primary care extraction protocol tuned to the needs of the longitudinal community. The expert group will use this framework to engage industry (GP software providers) and the NHS in order to realise an implemented software product. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://www.closer.ac.uk/research-fund-2/data-linkage/framework-linking-sharing-social-media-data-hi... |
| Description | Discussion of psychosis prediction work and data linkage at Mental Health Translational Research Collaboration meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion of psychosis prediction work, identifying areas of similar activity and potential collaborations across other UK academic institutions |
| Year(s) Of Engagement Activity | 2019,2020 |
| Description | Edinburgh Study of Youth Transition and Crime - Study Scientific Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Contributing record linkage and study management expertise to the Edinburgh Study of Youth Transition and Crime. |
| Year(s) Of Engagement Activity | 2020,2021 |
| Description | Enhancing Environmental data Resources in Cohort Studies: ALSPAC exemplar (ERICA) (ISIS/ISEE Conference, Canada) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd gave a presentation to an international conference of environmental epidemiologists to promote the ALSPAC study as a resource for linking geospatial data with health data for the investigation of physical health, mental health and wellbeing outcomes. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://na.eventscloud.com/ehome/294696/638645/ |
| Description | Enhancing Environmental data Resources in Cohort Studies: ALSPAC exemplar (ERICA). (IPDLN Confererence, Canada) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd gave a presentation to an international conference of Data Scientists (International Population Data Linkage Network) to promote the ALSPAC study as a resource for linking geospatial data with health data for the investigation of physical health, mental health and wellbeing outcomes. Boyd A. Enhancing Environmental data Resources in Cohort Studies: ALSPAC exemplar (ERICA). International Journal of Population Data Science. 2018 Sep 11;3(4). |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://ijpds.org/article/view/1040 |
| Description | Enhancing Environmental data Resources in Cohort Studies: ALSPAC exemplar (ERICA). (Invited Presentation) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd was invited to give a talk to the Manitoba Health Data Centre - a regional whole population research databank - to give insights to record linkage, participant acceptability and the use of Secure Research Environments to support research in geospatial epidemiology and the use of sensitive health records relating to Mental Health. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://umanitoba.ca/faculties/health_sciences/medicine/units/chs/departmental_units/mchp/resources/... |
| Description | Invited to Present - UK Longitudinal Linkage Collaboration. Elizabeth Blackwell Institute Health Data Science Showcase |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd (UK LLC Director) presented an update on the UK LLC to this NHS and academic group providing insights into the development of a national Trusted Research Environment in order to help inform the development of a TRE approach within the NHS Bristol, North Somerset and South Gloucestershire Clinical Commissioning Groups (BNSSG CCG) 'better care partnership' vision (being co-developed with HDR UK). This relationship contains aspirations to link local cohorts (ie, ALSPAC) into this TRE environment and also draws on insights from the development of the ALSPAC TRE through the MRC MH Pathfinder award which included linkage of the cohort to data from multiple NHS Trusts within the BNSSG CCG. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to Present - UK Longitudinal Linkage Collaboration. UK Biobank workshop on social science and environmental health linkages |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andy Boyd presented to UK Biobank online workshop on developing non-health linkages within the UKBB cohort. This was based on progress made in this area by ALSPAC and UK Longitudinal Linkage Collaboration. |
| Year(s) Of Engagement Activity | 2021 |
| Description | MRC Pathfinder meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop organised by the MRC to give all Pathfinder projects opportunity to provide updates on their progress, network and discuss potential collaboration |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://mrc.ukri.org/funding/browse/mh-data-pathfinder/mental-health-data-pathfinder/ |
| Description | MhDEL Ethics and Governance in Data Linkage Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | This is a MRC MH Pathfinder activity led by University of Oxford. Bristol contributed ALSPAC's experience of using linked health records, and the governance and ethics surrounding this, to support researchers investigating hypotheses relating to Mental Health. |
| Year(s) Of Engagement Activity | 2019 |
| Description | National Surveys of Sexual Activities and Lifestyle - Study Scientific Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Contributing record linkage and study management expertise to the National Surveys of Sexual Activities and Lifestyle. |
| Year(s) Of Engagement Activity | 2020,2021 |
| Description | Record linkage in social research for policymaking: evidence, methods and issues arising within longitudinal population studies. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andy Boyd chaired a session at the British Academy's "Realising the promise of big data in social research for public policy making." event to inform policy makers about the potential for research using Big Data approaches within longitudinal research. I also took part in the event panel session. This promoted the ALSPAC resource (as an exemplar) and the CLOSER programme. It raised awareness about the potential for linkage informed cohorts, but also the barriers faced. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Record linkage in the ALSPAC / Born in Bradford MRC Mental Health Pathfinder |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Andy Boyd gave a presentation at the UK-CRIS annual conference to raise awareness of the ALSPAC / Born in Bradford cohorts to research users and the NHS community involved in the UK-CRIS programme. To build relationships with UK-CRIS data owners to facilitate ALSPAC's linkage to these data. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Science Centre exhibit |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | We won a competition funded by the Alan Turing Institute to develop a "curiosity toolkit" in collaboration with Bristol science centre We The Curious, as part of the programme for their new Open City Lab. The toolkit allows visitors to We The Curious to contribute to research using the tools used by scientists themselves. In this case, we developed a series of activities around the question, "Can machines understand emotion?". The centrepiece is a large high-resolution touch screen where visitors can interact with a machine learning model, attempting to teach it to recognise emotions in facial expressions, an example of human-in-the-loop machine learning. This stems directly from our research using machine learning to infer emotion from digital footprint data. |
| Year(s) Of Engagement Activity | 2019,2020,2021,2022 |
| URL | https://jeangoldinginstitute.blogs.bristol.ac.uk/tag/we-the-curious/ |
| Description | Talk KCL |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of funded work on psychosis using ALSPAC data. This talk led to the start of a new collaboration, with plans for potential projects across institutions and applications for funding of these. |
| Year(s) Of Engagement Activity | 2021 |
| Description | The potential of linking cohort participants to official criminal records: a pilot study using the Avon Longitudinal Study of Parents and Children (ALSPAC) (ADRUK Conference, UK) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Alison Teyhan gave a presentation to the ADRUK conference on the feasibility of linking cohort studies to criminal justice outcomes held in Police administrative databases. Networks were established with the Home Office and criminal justice researchers. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://ijpds.org/adr2019 |
| Description | Wellcome LPS COVID Steering Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Contributing record linkage and study management expertise to the Wellcome LPS COVID Steering Group. |
| Year(s) Of Engagement Activity | 2020,2021 |