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Investigating five large population-based cohort studies to understand for the precursors of multimorbidity risk.

Lead Research Organisation: CARDIFF UNIVERSITY
Department Name: School of Medicine

Abstract

Multimorbidity refers to different diseases being present at the same time in a person. For example, we know that almost half of people with a mental health disorder also have a long-term physical health problem and a third of people with a physical health problem have a psychiatric disorder. Life is often more difficult for people with both physical and psychiatric disorders. They can struggle to get the best possible care and are at risk of living less long.

We don't know enough about why multimorbidity happens. To fully understand why changes in physical and mental health happen over time we need large studies of people whose health has been followed over time. Studies of children are very important because they can tell us about early risks for development of multimorbidity later in life. This is important for creating the best plans to prevent at-risk children developing multimorbidity.
To really understand how multimorbidity develops, studies need to have information about the many important behaviours and events that can influence health. For example, we need to know about someone's living environment (e.g., low income), lifestyle (e.g., lack of exercise) or life events (e.g., stressful experiences).

We know that genes can increase risk of physical and psychiatric disorder. We also know that some groups in society are at greater risk of multimorbidity, such as people of Asian and Minority Ethnic groups and people who live in poverty. We don't currently understand why this is and in this study we aim to get answers by studying the development of physical and psychiatric disorders in children at genetic risk. To understand differences in multimorbidity development in people from different ethnic and socio-economic backgrounds, we need studies in which all these groups are well represented.

If we understand better how multimorbidity develops in different groups in society (people at genetic risk, those from different ethnic and socio-economic backgrounds) this will help doctors give patients care that is matched to their specific needs. It will also help doctors, schools and others prevent multimorbidity in at-risk children in ways that suit their backgrounds best.

Finally, to conduct these studies, a team of researchers with a range of expertise is needed, who together understand the range of physical and psychiatric disorders, as well as how genes, the living environment, life style and life events influence these disorders over time.

We are a team with wide-ranging medical and research expertise in physical and psychiatric disorders. We have brought together five very large studies in which the health of close to 700,000 people has been followed over time. Rich medical data is available, including from medical records. Other important information has also been collected such as on the living environment, lifestyle and life events of these people. Genetic information is also available for all people in these studies.

These studies follow the health over time of both adults and children. We can therefore study how physical and psychiatric disorders happen together in adulthood. Importantly we can then also study the early stages of the development of multimorbidity in children. Because our child and adult samples differ in ethnic and socio-economic background, we can also study if the development of multimorbidity differs for different groups in society. Finally, because we have genetic data we can study how genes influence multimorbidity development in people at risk.

Our study will help us understand how multimorbidity develops and which behaviours and events influence this. What we learn will be important for the prevention of multimorbidity in children who are at risk because of genetic, ethnic or economic reasons. We will create health messages for specific groups in society and this can reduce multimorbidity in at risk groups in the future.

Technical Summary

How can we provide targeted interventions that increase the probability of good long term physical and mental health? 46% of people with a mental health disorder have a long-term physical condition and 30% with a long-term physical condition have a mental health problem. The social and economic cost of this multimorbidity (MM) is substantial.
Understanding the nature of MM requires an approach that maps developmental trajectories, and needs a cross-disciplinary team with wide-ranging clinical and research expertise. Richly phenotyped longitudinal cohorts are needed to address the complex interplay between physical and mental health problems and interactions over time with socioeconomic position (SEP), lifestyle and life events.
Our cross-disciplinary team will bring together a unique resource of five large longitudinal population-based cohorts (total n~679,000), combining genome-wide data with highly detailed information on health, education and premorbid and current exposure factors. We will conduct highly powered analysis of MM trajectories in our adult cohorts, which will guide the study of early life precursors in our child cohorts.
Our cohorts are highly diverse in developmental stage (three multigenerational child cohorts and two adult cohorts); ethnic heritage; and SEP. This allows us to map MM across the lifespan in representative ethnic and socio-economic groups, addressing issues of confounding and bias associated with clinical cohorts, and providing insights to inform tailored interventions.
We will study the trajectories of population subgroups that are at high genetic risk of MM. We will include polygenic risk scores (PRS) for relevant traits in our models and explore genomic Copy Number Variants associated with neurodevelopmental disorders.
We will make our findings readily available to the research community and develop materials that will help a range of stakeholders better support those at elevated risk of MM.

Organisations

Publications

10 25 50
 
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
 
Description A national framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards
Geographic Reach National 
Policy Influence Type Contribution to new or improved professional practice
Impact The national framework laid out the principles that should underpin the planning, design and delivery of an autism assessment pathway that works for everyone irrespective of where they live, their background, age, ethnicity, sex, gender, sexuality, disability, or health conditions. Implementation of this national framework has included taking actions to reduce known sources of health inequality that exist in access to, or experiences of, an autism assessment across England.
URL https://www.england.nhs.uk/long-read/a-national-framework-to-deliver-improved-outcomes-in-all-age-au...
 
Description BRIDGE programme lecture in Precision Medicine at Copenhagen University
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Educating researchers in medical science about precision medicine.
 
Description Bradford Children's Trust and Bradford District and Craven Health and Care Partnership redesign of Bradford children's services
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or improved professional practice
Impact Bradford's Children Services are being redesigned in an evidence-based manner.
 
Description Contributed to Department for Education publication 'Genomics: Implications for education' Ref: ISBN 978-1-83870-584-8, DFE-RR1443.
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
URL https://www.gov.uk/government/publications/genomics-in-education.
 
Description Contributor to "A country that works for all children and young people: An evidence-based plan for supporting physical activity and healthy nutrition with and through education settings
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
URL https://www.n8research.org.uk/research-focus/child-of-the-north/2024-campaign/physical-activity-nutr...
 
Description Contributor to "A country that works for all children and young people: An evidence-based plan for supporting physical activity and healthy nutrition with and through education settings
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
URL https://www.n8research.org.uk/research-focus/child-of-the-north/2024-campaign/physical-activity-nutr...
 
Description Contributor to: "An evidence-based plan for addressing the special educational needs and disabilities (SEND) assessment and support crisis"
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
URL https://www.n8research.org.uk/research-focus/child-of-the-north/2024-campaign/#:~:text=make%20this%2...
 
Description Department for Education Ministerial briefing: 10th July 2023
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact A 'test-and-learn' approach to a new approach to the identification and support of autism was trialled following the Ministerial briefing. The approach was successful and is now being explored as a national option by the new government.
 
Description Department for Education Priority Education Investment Board - Member of the Bradford Board
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a guidance/advisory committee
Impact Supports effective use of public funds being invested into the education system across Bradford.
URL https://www.gov.uk/government/publications/education-investment-areas/priority-education-investment-...
 
Description Department for Levelling Up Ministerial briefing: 14th July 2023
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Department of Health and Social Care workshop on access to mental health services in children and young people with rare conditions
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
 
Description Dr Megan Wood and Prof Mark Mon-Williams - Gave evidence for Child of the North APPG in Westminster
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
 
Description Electronic Vulnerability Index task force
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Genetic research in psychiatric practice
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Taught specialists in psychiatric practice regarding the role on genetics and genetic research in improving patient diagnosis and care.
 
Description Humber and North Yorkshire Integrated Care Board Futures Group
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a guidance/advisory committee
Impact The Humber and North Yorkshire Integrated Care Board has been able to implement organisational changes to allow its data assets to be used for population health planning.
 
Description Input into the National Special Educational Needs and Disabilities (SEND) Review and Autism Strategy Department for Education.
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
 
Description LINC Collaborative meeting with NIHR/ DHSC to discuss future funding priorities for multimorbidity research
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
 
Description Multi stakeholder workshop on genomics in education
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
 
Description National Cultural Data Observatory
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact Impact of cultural activities delivered through Bradford City of Culture 2025 being captured through data recording.
URL https://www.culturalvalue.org.uk/our-work/making-data-work/
 
Description Operational guidance to deliver improved outcomes in all-age autism assessment pathways: Guidance for integrated care boards
Geographic Reach National 
Policy Influence Type Contribution to new or improved professional practice
Impact Improved guidance for integrated care boards outcomes in the provision of all-age autism assessment pathways.
URL https://www.england.nhs.uk/long-read/operational-guidance-to-deliver-improved-outcomes-in-all-age-au...
 
Description Panel member in forum 'Tackling structural inequalities & championing evidential approaches, to improve the life chances of children in Bradford and beyond' event.
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
URL https://caer.org.uk/events/tackling-structural-inequalities-championing-evidential-approaches-to-imp...
 
Description Patient/Public Involvement in LINC project
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact People with lived experience of multimorbidity have gained confidence, knowledge and understanding about multimorbidity research and about their role in informing researchers about the impacts of multimorbidity and in shaping how key messages are developed and communicated
URL https://www.cardiff.ac.uk/lifespan-multimorbidity-research-collaborative
 
Description Presentation about heredatibility and Evolution of Mental Health Disorders
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Improving the knowledge and understanding of psychiatrists of mental health disorders in patients.
 
Description Provided evidence to the Times Crime and Justice Commission
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
URL https://www.thetimes.com/society/crime-justice-commission
 
Description Provided evidence to the Times Education Commission
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact The report helped shape government approaches to creating a more inclusive education system (work that MMW is now supporting through his role as Deputy Chair of the Department for Education's Science Advisory Council).
URL https://nuk-tnl-editorial-prod-staticassets.s3.amazonaws.com/2022/education-commission/Times%20Educa...
 
Description Provided evidence to the Times Health Commission
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact Lord Darzi of Denham's landmark review was informed by the findings of The Times Health Commission. As a member of The Times Commission, Darzi heard the arguments that reinforced what he saw as a surgeon on his hospital rounds and which were subsequently amplified by his government inquiry. The 'Darzi' review is now shaping government policy towards the NHS and MMW is supporting discussions on how health and education systems can be better connected through routine administrative data via his role as Deputy Chair of the Science Advisory Council supporting the Opportunity Mission.
URL https://www.thetimes.com/uk/article/the-times-health-commission-recommendations-nhs-dzhvfzbs6
 
Description Report to Welsh Assembly Parliamentary Event for Rare Disease Day summarizing our research on mental health conditions in people with rare genetic conditions.
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
URL https://geneticalliance.org.uk/wp-content/uploads/2021/02/Genetic-Alliance-Wales-CPG-Report-Final.pd...
 
Description Resetting the system to tackle problems early and prevent crisis - Parliamentary Evidence Session
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
Impact The recommendations made to the committee (and subsequently captured in the 'Child of The North' report series) were incorporated in the Labour manifesto and are now shaping government policy.
 
Description Teaching neurogenetics on Master's in Neuroscience at Copenhagen University
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Increasing knowledge and awareness of researchers in neuroscience of the influence of genetics on psychiatric outcomes.
 
Description The Royal Commission into Early Childhood Education and Care
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact The report generated the following commitment to action from the Australian Government: Investing to give every child access to quality early childhood education and care from the age of three years, including more preschool hours for those who need it. Preschool will be a place that offers early learning, where children's developmental needs are identified, and where connections are made to services and information - becoming the 'backbone' for better connected child and family supports. Many early childhood education and care services already go above and beyond to support families and communities. We will invest so that integrated support happens by design, not by chance or goodwill. South Australia has some of the country's best early childhood leaders, teachers and educators. We are going to invest in them and invest to attract more. This is more than three-year-old preschool. We are going to work in partnership with all stakeholders to build a universal early childhood development system that connects families to the right opportunities at the right time to support healthy child development. A system that is nation leading. Our system will reach all children, from birth, with information and support for families and carers, who make all the difference in a child's development. It will use data and evidence to uphold quality and help us adapt over time as we learn more about child development. It will invest in early years services to help them connect, learn, adapt and improve. If we want a fairer, better future for children before they start school, we must be ambitious. Change will not happen by chance. We must think and act differently. We will use the tools of government, in new ways and in partnership with the sector, non-government and Aboriginal Community Controlled organisations, and broader communities. We will act as the steward of a system that is relentless in its purpose to put children first and reduce developmental vulnerability.
URL https://www.royalcommissionecec.sa.gov.au/publications/final-report
 
Description Training practitioners in children and adolescent psychiatry
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Teaching specialists in child and adolescent mental health.
 
Description West Yorkshire Spoke Lead for the NHS Yorkshire and Humber Secure Data Environment
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact The Connected Bradford database (the first component of the planned Connected Yorkshire dataset) has provided insights into how public services can be delivered more effectively across health and education leading to regional and national changes in policy.
URL https://yorkshirehumbersde.nhs.uk/
 
Description deCODE-CHB/DBDS workshop
Geographic Reach Europe 
Policy Influence Type Participation in a guidance/advisory committee
Impact The research aims to improve patient care, diagnostics and treatment and further scientific research and discoveries in the field of biomedical acience.
 
Description Investigating physical and mental health multi-morbidity determinants throughout the lifespan.
Amount £66,000 (GBP)
Organisation Health and Care Research Wales 
Sector Public
Country United Kingdom
Start 01/2023 
End 12/2025
 
Description Investigating physical and mental health multimorbidity determinants throughout the lifespan.
Amount £66,000 (GBP)
Funding ID HS-22-04 
Organisation Health and Care Research Wales 
Sector Public
Country United Kingdom
Start 01/2023 
End 12/2025
 
Description MLTC-M Community of Practice in ECR training on best practice patient and public involvement with diverse populations
Amount £48,902 (GBP)
Funding ID MR/X004341/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 06/2022 
End 01/2024
 
Description Multimorbidity clusters, trajectories and genetic risk, in British south Asians
Amount £505,647 (GBP)
Funding ID MR/S027297/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 03/2020 
End 05/2023
 
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 Using artificial intelligence (AI) to characterize the dynamic inter-relationships between MUltiple Long-term condiTIons and PoLYpharmacy and across diverse UK populations and inform health care pathways (AI-MULTIPLY). AIM Research Collaboration
Amount £2,971,000 (GBP)
Funding ID NIHR 31672 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 03/2022 
End 11/2025
 
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 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 Genes & Health 
Description A large resource of genomic and linked electronic health record data on Genes & Health volunteers (currently 54k). 
Type Of Material Database/Collection of data 
Year Produced 2017 
Provided To Others? Yes  
Impact Wide academic collaborations and research studies 
URL http://www.genesandhealth.org
 
Title MULTIPLY long term conditions open access codelist resource 
Description Most research on multimorbidity, to date, includes a maximum of 30-40 long-term conditions based heavily on the Quality Outcomes Framework in primary care, and seminal papers by, e.g. Barnett et al. We have developed MULTIPLY, a detailed clinical consensus-building exercise to define ~200 conditions for inclusion in multimorbidity studies, particularly suited to data-driven projects using real world data. We have undertaken detailed clinical curation of these codelists (across linked primary and secondary care datasets) using existing codelist resources, e.g. from CPRD, CALIBER and adding our own detailed and structured clinical review. The codelists are interoperable across different primary care software systems. Our MULTIPLY codelists are now available in an open access GitHub (https://github.com/f-eto/MULTIPLY-Initiative) with the following DOI ( https://doi.org/10.5281/zenodo.7643566) 
Type Of Material Database/Collection of data 
Year Produced 2022 
Provided To Others? Yes  
Impact Our MULITPLY codelists are already being used by several other large UKRI-funded research studies, including AI-MULTIPLY, LINC multimorbidity and Gene & Health. 
 
Description ALSPAC 
Organisation University of Bristol
Department Avon Longitudinal Study of Parents and Children (ALSPAC)
Country United Kingdom 
Sector Academic/University 
PI Contribution Enhanced links between research institutions: Cardiff University, Leeds University, Queen Mary University London, Copenhagen University, Exeter University, Wellcome Sanger Institute. Enhanced links between research cohorts Genes and Health (G&H); Born in Bradford (BiB) and Danish Integrative Psychiatric Research (iPSYCH) studies.
Collaborator Contribution The ALSPAC cohort is one of the five research cohorts our Research Collaborative will conduct research in. ALSPAC/ Bristol researchers have made significant contributions to the development of our Research Collaborative grant proposal.
Impact Collaborative grant proposal submitted.
Start Year 2020
 
Description BiB 
Organisation Bradford Institute for Health Research (BIHR)
Department Born in Bradford
Country United Kingdom 
Sector Public 
PI Contribution Enhanced links between research institutions: Cardiff University, Bristol University, Queen Mary University London, Copenhagen University, Exeter University, Wellcome Sanger Institute. Enhanced links between research cohorts Genes and Health (G&H); Avon Longitudinal Study of Parents and Children (ALSPAC), and Danish Integrative Psychiatric Research (iPSYCH) studies. We have called the CNVs in half of the BiB sample (children and parents) already.
Collaborator Contribution The BiB cohort is one of the five research cohorts our Research Collaborative will conduct research in. BiB/ Leeds researchers have made significant contributions to the development of our Research Collaborative grant proposal.
Impact Collaborative grant proposal submitted.
Start Year 2016
 
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 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 DECIPHer 
Organisation Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer)
Country United Kingdom 
Sector Public 
PI Contribution Our Research Collaborative has discussed our plans with DECIPHer and thus increased awareness of the role of childhood risk factors for the development of internalizing disorder and cardiometabolic disorder multimorbidity later in life.
Collaborator Contribution DECIPHer will contribute to our Research Collaborative by sharing experiences about prevention and intervention development. DECIPHer is committed to providing expertise in how successful interventions can be developed based on the findings our Research Collaborative will generate. Our Research Collaborative would partner with DECIPHer for future funding to do so. DECIPHer will also provide access to their wide-ranging networks of policy makers, practitioners and young people.
Impact This is a multidisciplinary collaboration which involves mental health, physical health, genetics, epidemiology and intervention development.
Start Year 2012
 
Description DEMISTIFI-Multi Morbidity Consortium 
Organisation University of Nottingham
Country United Kingdom 
Sector Academic/University 
PI Contribution We will enable opportunities for the DEMISTIFI-Multi Morbidity Consortium for further research of genetic risk factors for multi-organ fibrosis in our cohorts.
Collaborator Contribution The DEMISTIFI-Multi Morbidity Consortium will allow us to extend our collaborations and allow us to apply our analytical strategies to new multimorbidity clusters.
Impact Discussions about collaborations
Start Year 2021
 
Description DEMISTIFY multimorbidity Collaborative 
Organisation Imperial College London
Country United Kingdom 
Sector Academic/University 
PI Contribution We have joined each others conferences and have discussions about collaboration
Collaborator Contribution We have joined each others conferences and have discussions about collaboration
Impact Discussions
Start Year 2020
 
Description East London Genes and Health (ELGH) 
Organisation Centre of the Cell
Country United Kingdom 
Sector Academic/University 
PI Contribution I am deputy lead for this large community genomics study. I contribute towards the overall running of this important study (including recruitment, study design and management, recall-by-genotype, community engagement) which is a large community genomics project of British Bangladeshis and Pakistanis (n=28,000). I am also the local PI for a UK consortium studying type 2 diabetes in this cohort, including running recall-by-genotype studies, analysis of big data (using electronic health records) and the design of future metabolic phenotyping studies.
Collaborator Contribution ELGH works with a large international consortium (including academic and industry partners) involved in many of its activities. I am working particularly with a UK-wide consortium of diabetes researchers in recall-by-genotype studies based on rare diabetes and obesity-associated variants.
Impact Currently this is work in progress and we are in the recruitment phase to recall-by-genotype studies. We have a broad range of multidisciplinary partnerships involved in our community engagement and outreach activities, including close work with community-based organisations (e.g. https://www.safh.org.uk) and engagement workshops involving anthropologists and experts in public engagement (https://www.centreofthecell.org).
Start Year 2017
 
Description East London Genes and Health (ELGH) 
Organisation Imperial College London
Department Faculty of Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution I am deputy lead for this large community genomics study. I contribute towards the overall running of this important study (including recruitment, study design and management, recall-by-genotype, community engagement) which is a large community genomics project of British Bangladeshis and Pakistanis (n=28,000). I am also the local PI for a UK consortium studying type 2 diabetes in this cohort, including running recall-by-genotype studies, analysis of big data (using electronic health records) and the design of future metabolic phenotyping studies.
Collaborator Contribution ELGH works with a large international consortium (including academic and industry partners) involved in many of its activities. I am working particularly with a UK-wide consortium of diabetes researchers in recall-by-genotype studies based on rare diabetes and obesity-associated variants.
Impact Currently this is work in progress and we are in the recruitment phase to recall-by-genotype studies. We have a broad range of multidisciplinary partnerships involved in our community engagement and outreach activities, including close work with community-based organisations (e.g. https://www.safh.org.uk) and engagement workshops involving anthropologists and experts in public engagement (https://www.centreofthecell.org).
Start Year 2017
 
Description East London Genes and Health (ELGH) 
Organisation Social Action for Health
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution I am deputy lead for this large community genomics study. I contribute towards the overall running of this important study (including recruitment, study design and management, recall-by-genotype, community engagement) which is a large community genomics project of British Bangladeshis and Pakistanis (n=28,000). I am also the local PI for a UK consortium studying type 2 diabetes in this cohort, including running recall-by-genotype studies, analysis of big data (using electronic health records) and the design of future metabolic phenotyping studies.
Collaborator Contribution ELGH works with a large international consortium (including academic and industry partners) involved in many of its activities. I am working particularly with a UK-wide consortium of diabetes researchers in recall-by-genotype studies based on rare diabetes and obesity-associated variants.
Impact Currently this is work in progress and we are in the recruitment phase to recall-by-genotype studies. We have a broad range of multidisciplinary partnerships involved in our community engagement and outreach activities, including close work with community-based organisations (e.g. https://www.safh.org.uk) and engagement workshops involving anthropologists and experts in public engagement (https://www.centreofthecell.org).
Start Year 2017
 
Description East London Genes and Health (ELGH) 
Organisation The Wellcome Trust Sanger Institute
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution I am deputy lead for this large community genomics study. I contribute towards the overall running of this important study (including recruitment, study design and management, recall-by-genotype, community engagement) which is a large community genomics project of British Bangladeshis and Pakistanis (n=28,000). I am also the local PI for a UK consortium studying type 2 diabetes in this cohort, including running recall-by-genotype studies, analysis of big data (using electronic health records) and the design of future metabolic phenotyping studies.
Collaborator Contribution ELGH works with a large international consortium (including academic and industry partners) involved in many of its activities. I am working particularly with a UK-wide consortium of diabetes researchers in recall-by-genotype studies based on rare diabetes and obesity-associated variants.
Impact Currently this is work in progress and we are in the recruitment phase to recall-by-genotype studies. We have a broad range of multidisciplinary partnerships involved in our community engagement and outreach activities, including close work with community-based organisations (e.g. https://www.safh.org.uk) and engagement workshops involving anthropologists and experts in public engagement (https://www.centreofthecell.org).
Start Year 2017
 
Description East London Genes and Health (ELGH) 
Organisation University of Exeter
Department Medical School
Country United Kingdom 
Sector Academic/University 
PI Contribution I am deputy lead for this large community genomics study. I contribute towards the overall running of this important study (including recruitment, study design and management, recall-by-genotype, community engagement) which is a large community genomics project of British Bangladeshis and Pakistanis (n=28,000). I am also the local PI for a UK consortium studying type 2 diabetes in this cohort, including running recall-by-genotype studies, analysis of big data (using electronic health records) and the design of future metabolic phenotyping studies.
Collaborator Contribution ELGH works with a large international consortium (including academic and industry partners) involved in many of its activities. I am working particularly with a UK-wide consortium of diabetes researchers in recall-by-genotype studies based on rare diabetes and obesity-associated variants.
Impact Currently this is work in progress and we are in the recruitment phase to recall-by-genotype studies. We have a broad range of multidisciplinary partnerships involved in our community engagement and outreach activities, including close work with community-based organisations (e.g. https://www.safh.org.uk) and engagement workshops involving anthropologists and experts in public engagement (https://www.centreofthecell.org).
Start Year 2017
 
Description East London Genes and Health (ELGH) 
Organisation University of Oxford
Department Oxford Centre for Diabetes Endocrinology and Metabolism (OCDEM)
Country United Kingdom 
Sector Academic/University 
PI Contribution I am deputy lead for this large community genomics study. I contribute towards the overall running of this important study (including recruitment, study design and management, recall-by-genotype, community engagement) which is a large community genomics project of British Bangladeshis and Pakistanis (n=28,000). I am also the local PI for a UK consortium studying type 2 diabetes in this cohort, including running recall-by-genotype studies, analysis of big data (using electronic health records) and the design of future metabolic phenotyping studies.
Collaborator Contribution ELGH works with a large international consortium (including academic and industry partners) involved in many of its activities. I am working particularly with a UK-wide consortium of diabetes researchers in recall-by-genotype studies based on rare diabetes and obesity-associated variants.
Impact Currently this is work in progress and we are in the recruitment phase to recall-by-genotype studies. We have a broad range of multidisciplinary partnerships involved in our community engagement and outreach activities, including close work with community-based organisations (e.g. https://www.safh.org.uk) and engagement workshops involving anthropologists and experts in public engagement (https://www.centreofthecell.org).
Start Year 2017
 
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 Genes & Health metabolic research consortium 
Organisation Council of Scientific and Industrial Research (CSIR)
Department Centre for Cellular and Molecular Biology (CCMB)
Country India 
Sector Academic/University 
PI Contribution I lead a large interdisciplinary research programme, embedded in Genes & Health, that is using interdisciplinary methods to better understand the role of genetics on metabolic health in British south Asians. This work spans rare variant gene discovery (collaborating with Prof Sir Steve O'Rahilly's team in Cambridge) and the generation of ancestry-specific polygenic risk scores for for clinical application.
Collaborator Contribution University of Cambridge (Prof Sir Steve O'Rahilly) - rare gene variant discovery, functional characterisation and validation in population based cohorts University of Exeter (Richard Oram, Mike Weedon) - construction and testing of type 1 diabetes polygenic risk scores and its application to studies of diabetes misclassification London School of Hygiene and Tropical Medicine (Rohini Mathur) - advanced epidemiological analysis of real world data in British south Asians Wellcome Trust Sanger Institute (Hilary Martin) - construction and testing of polygenic risks scores KEM Hospital Pune (Ranjan Yajnik) - reference/validation south Asian populations and understanding of phenotype-genotype correlation CSIR (Giriraj Chandak) - GWAS and polygenic risk score generation in south Asian populations
Impact 1. Lam BYH*, Williamson A*, Finer S*(*joint first authors), Day F, Tadross JA,Gonçalves Soares A, Wade K, Sweeney P, Bedenbaugh MN, Porter DT, Melvin A, Ellacott KLJ, Lippert RN, Buller S, Rosmaninho-Salgado J, Dowsett GKC, Ridley KE, Xu Z, Cimino I, Rimmington D, Rainbow K, Duckett K, Holmqvist S, Khan A, Dai X, Bochukova EG, Genes & Health Research Team, Trembath RC, Martin HC, Coll AP, Rowitch DH, Wareham NJ, van Heel DA, Timpson N, Simerly RB, Ong KK, Cone, RD, Langenberg C*, Perry JRB*, Yeo GS*, O'Rahilly S*. (2021). MC3R links nutritional state to childhood growth and the timing of puberty. Nature, in press (2020-12-22599D) 2. Mathur R, Hull SA, Hodgson S, Finer S (2021). Characterisation of type 2 diabetes subgroups and their association with ethnicity and clinical outcomes: a UK real-world data study using the East London Database. British Journal of General Practice. 2022 Feb. https://doi.org/10.3399/BJGP.2021.0508 3. Pervjakova N, Moen GH, Borges MC, Ferreira T, Cook JP, Allard C, Beaumont RN, Canouil M, Hatem G, Heiskala A, Joensuu A, Karhunen V, Kwak SH, Lin FTJ, Liu J, Rifas-Shiman S, Tam CH, Tam WH, Thorleifsson G, Andrew T, Auvinen J, Bhowmik B, Bonnefond A, Delahaye F, Demirkan A, Froguel P, Haller-Kikkatalo K, Hardardottir H, Hummel S, Hussain A, Kajantie E, Keikkala E, Khamis A, Lahti J, Lekva T, Mustaniemi S, Sommer C, Tagoma A, Tzala E, Uibo R, Vääräsmäki M, Villa PM, Birkeland KI, Bouchard L, Duijn CM, Finer S, Groop L, Hämäläinen E, Hayes GM, Hitman GA, Jang HC, Järvelin MR, Jenum AK, Laivuori H, Ma RC, Melander O, Oken E, Park KS, Perron P, Prasad RB, Qvigstad E, Sebert S, Stefansson K, Steinthorsdottir V, Tuomi T, Hivert MF, Franks PW, McCarthy MI, Lindgren CM, Freathy RM, Lawlor DA, Morris AP, Mägi R. Multi-ancestry genome-wide association study of gestational diabetes mellitus highlights genetic links with type 2 diabetes. Hum Mol Genet. 2022 Feb 26: Epub ahead of print. PMID: 35220425. 4. Nongmaithem SS, Beaumont RN, Dedaniya A, Wood AR, Ogunkolade BW, Hassan Z, Krishnaveni GV, Kumaran K, Potdar RD, Sahariah SA, Krishna M, Di Gravio C, Mali ID, Sankareswaran A, Hussain A, Bhowmik BW, Khan AKA, Knight BA, Frayling TM, Finer S, Fall CH, Yajnik CS, Freathy RM, Hitman GA, Chandak GR. Babies of South Asian and European Ancestry Show Similar Associations with Genetic Risk Score for Birth Weight Despite the Smaller Size of South Asian Newborns. Diabetes. 2022 Jan. Epub ahead of print. PMID: 35061033. 5. Hodgson S, Huang Q, Sallah N, Genes & Health Research Team, Griffiths CG, Newman WG, Trembath RC, Lumbers T, Kuchenbaecker K, van Heel DA, Mathur R, Martin H, Finer S (2021) Harnessing the power of polygenic risk scores to predict type 2 diabetes and its subtypes in a high-risk population of British Pakistanis and Bangladeshis in a routine healthcare setting. MedRxiv Preprint (under review with PLoS Medicine) https://www.medrxiv.org/content/10.1101/2021.07.12.21259837v1.full.pdf.
Start Year 2020
 
Description Genes & Health metabolic research consortium 
Organisation KEM Hospital, Pune
Country India 
Sector Hospitals 
PI Contribution I lead a large interdisciplinary research programme, embedded in Genes & Health, that is using interdisciplinary methods to better understand the role of genetics on metabolic health in British south Asians. This work spans rare variant gene discovery (collaborating with Prof Sir Steve O'Rahilly's team in Cambridge) and the generation of ancestry-specific polygenic risk scores for for clinical application.
Collaborator Contribution University of Cambridge (Prof Sir Steve O'Rahilly) - rare gene variant discovery, functional characterisation and validation in population based cohorts University of Exeter (Richard Oram, Mike Weedon) - construction and testing of type 1 diabetes polygenic risk scores and its application to studies of diabetes misclassification London School of Hygiene and Tropical Medicine (Rohini Mathur) - advanced epidemiological analysis of real world data in British south Asians Wellcome Trust Sanger Institute (Hilary Martin) - construction and testing of polygenic risks scores KEM Hospital Pune (Ranjan Yajnik) - reference/validation south Asian populations and understanding of phenotype-genotype correlation CSIR (Giriraj Chandak) - GWAS and polygenic risk score generation in south Asian populations
Impact 1. Lam BYH*, Williamson A*, Finer S*(*joint first authors), Day F, Tadross JA,Gonçalves Soares A, Wade K, Sweeney P, Bedenbaugh MN, Porter DT, Melvin A, Ellacott KLJ, Lippert RN, Buller S, Rosmaninho-Salgado J, Dowsett GKC, Ridley KE, Xu Z, Cimino I, Rimmington D, Rainbow K, Duckett K, Holmqvist S, Khan A, Dai X, Bochukova EG, Genes & Health Research Team, Trembath RC, Martin HC, Coll AP, Rowitch DH, Wareham NJ, van Heel DA, Timpson N, Simerly RB, Ong KK, Cone, RD, Langenberg C*, Perry JRB*, Yeo GS*, O'Rahilly S*. (2021). MC3R links nutritional state to childhood growth and the timing of puberty. Nature, in press (2020-12-22599D) 2. Mathur R, Hull SA, Hodgson S, Finer S (2021). Characterisation of type 2 diabetes subgroups and their association with ethnicity and clinical outcomes: a UK real-world data study using the East London Database. British Journal of General Practice. 2022 Feb. https://doi.org/10.3399/BJGP.2021.0508 3. Pervjakova N, Moen GH, Borges MC, Ferreira T, Cook JP, Allard C, Beaumont RN, Canouil M, Hatem G, Heiskala A, Joensuu A, Karhunen V, Kwak SH, Lin FTJ, Liu J, Rifas-Shiman S, Tam CH, Tam WH, Thorleifsson G, Andrew T, Auvinen J, Bhowmik B, Bonnefond A, Delahaye F, Demirkan A, Froguel P, Haller-Kikkatalo K, Hardardottir H, Hummel S, Hussain A, Kajantie E, Keikkala E, Khamis A, Lahti J, Lekva T, Mustaniemi S, Sommer C, Tagoma A, Tzala E, Uibo R, Vääräsmäki M, Villa PM, Birkeland KI, Bouchard L, Duijn CM, Finer S, Groop L, Hämäläinen E, Hayes GM, Hitman GA, Jang HC, Järvelin MR, Jenum AK, Laivuori H, Ma RC, Melander O, Oken E, Park KS, Perron P, Prasad RB, Qvigstad E, Sebert S, Stefansson K, Steinthorsdottir V, Tuomi T, Hivert MF, Franks PW, McCarthy MI, Lindgren CM, Freathy RM, Lawlor DA, Morris AP, Mägi R. Multi-ancestry genome-wide association study of gestational diabetes mellitus highlights genetic links with type 2 diabetes. Hum Mol Genet. 2022 Feb 26: Epub ahead of print. PMID: 35220425. 4. Nongmaithem SS, Beaumont RN, Dedaniya A, Wood AR, Ogunkolade BW, Hassan Z, Krishnaveni GV, Kumaran K, Potdar RD, Sahariah SA, Krishna M, Di Gravio C, Mali ID, Sankareswaran A, Hussain A, Bhowmik BW, Khan AKA, Knight BA, Frayling TM, Finer S, Fall CH, Yajnik CS, Freathy RM, Hitman GA, Chandak GR. Babies of South Asian and European Ancestry Show Similar Associations with Genetic Risk Score for Birth Weight Despite the Smaller Size of South Asian Newborns. Diabetes. 2022 Jan. Epub ahead of print. PMID: 35061033. 5. Hodgson S, Huang Q, Sallah N, Genes & Health Research Team, Griffiths CG, Newman WG, Trembath RC, Lumbers T, Kuchenbaecker K, van Heel DA, Mathur R, Martin H, Finer S (2021) Harnessing the power of polygenic risk scores to predict type 2 diabetes and its subtypes in a high-risk population of British Pakistanis and Bangladeshis in a routine healthcare setting. MedRxiv Preprint (under review with PLoS Medicine) https://www.medrxiv.org/content/10.1101/2021.07.12.21259837v1.full.pdf.
Start Year 2020
 
Description Genes & Health metabolic research consortium 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Country United Kingdom 
Sector Academic/University 
PI Contribution I lead a large interdisciplinary research programme, embedded in Genes & Health, that is using interdisciplinary methods to better understand the role of genetics on metabolic health in British south Asians. This work spans rare variant gene discovery (collaborating with Prof Sir Steve O'Rahilly's team in Cambridge) and the generation of ancestry-specific polygenic risk scores for for clinical application.
Collaborator Contribution University of Cambridge (Prof Sir Steve O'Rahilly) - rare gene variant discovery, functional characterisation and validation in population based cohorts University of Exeter (Richard Oram, Mike Weedon) - construction and testing of type 1 diabetes polygenic risk scores and its application to studies of diabetes misclassification London School of Hygiene and Tropical Medicine (Rohini Mathur) - advanced epidemiological analysis of real world data in British south Asians Wellcome Trust Sanger Institute (Hilary Martin) - construction and testing of polygenic risks scores KEM Hospital Pune (Ranjan Yajnik) - reference/validation south Asian populations and understanding of phenotype-genotype correlation CSIR (Giriraj Chandak) - GWAS and polygenic risk score generation in south Asian populations
Impact 1. Lam BYH*, Williamson A*, Finer S*(*joint first authors), Day F, Tadross JA,Gonçalves Soares A, Wade K, Sweeney P, Bedenbaugh MN, Porter DT, Melvin A, Ellacott KLJ, Lippert RN, Buller S, Rosmaninho-Salgado J, Dowsett GKC, Ridley KE, Xu Z, Cimino I, Rimmington D, Rainbow K, Duckett K, Holmqvist S, Khan A, Dai X, Bochukova EG, Genes & Health Research Team, Trembath RC, Martin HC, Coll AP, Rowitch DH, Wareham NJ, van Heel DA, Timpson N, Simerly RB, Ong KK, Cone, RD, Langenberg C*, Perry JRB*, Yeo GS*, O'Rahilly S*. (2021). MC3R links nutritional state to childhood growth and the timing of puberty. Nature, in press (2020-12-22599D) 2. Mathur R, Hull SA, Hodgson S, Finer S (2021). Characterisation of type 2 diabetes subgroups and their association with ethnicity and clinical outcomes: a UK real-world data study using the East London Database. British Journal of General Practice. 2022 Feb. https://doi.org/10.3399/BJGP.2021.0508 3. Pervjakova N, Moen GH, Borges MC, Ferreira T, Cook JP, Allard C, Beaumont RN, Canouil M, Hatem G, Heiskala A, Joensuu A, Karhunen V, Kwak SH, Lin FTJ, Liu J, Rifas-Shiman S, Tam CH, Tam WH, Thorleifsson G, Andrew T, Auvinen J, Bhowmik B, Bonnefond A, Delahaye F, Demirkan A, Froguel P, Haller-Kikkatalo K, Hardardottir H, Hummel S, Hussain A, Kajantie E, Keikkala E, Khamis A, Lahti J, Lekva T, Mustaniemi S, Sommer C, Tagoma A, Tzala E, Uibo R, Vääräsmäki M, Villa PM, Birkeland KI, Bouchard L, Duijn CM, Finer S, Groop L, Hämäläinen E, Hayes GM, Hitman GA, Jang HC, Järvelin MR, Jenum AK, Laivuori H, Ma RC, Melander O, Oken E, Park KS, Perron P, Prasad RB, Qvigstad E, Sebert S, Stefansson K, Steinthorsdottir V, Tuomi T, Hivert MF, Franks PW, McCarthy MI, Lindgren CM, Freathy RM, Lawlor DA, Morris AP, Mägi R. Multi-ancestry genome-wide association study of gestational diabetes mellitus highlights genetic links with type 2 diabetes. Hum Mol Genet. 2022 Feb 26: Epub ahead of print. PMID: 35220425. 4. Nongmaithem SS, Beaumont RN, Dedaniya A, Wood AR, Ogunkolade BW, Hassan Z, Krishnaveni GV, Kumaran K, Potdar RD, Sahariah SA, Krishna M, Di Gravio C, Mali ID, Sankareswaran A, Hussain A, Bhowmik BW, Khan AKA, Knight BA, Frayling TM, Finer S, Fall CH, Yajnik CS, Freathy RM, Hitman GA, Chandak GR. Babies of South Asian and European Ancestry Show Similar Associations with Genetic Risk Score for Birth Weight Despite the Smaller Size of South Asian Newborns. Diabetes. 2022 Jan. Epub ahead of print. PMID: 35061033. 5. Hodgson S, Huang Q, Sallah N, Genes & Health Research Team, Griffiths CG, Newman WG, Trembath RC, Lumbers T, Kuchenbaecker K, van Heel DA, Mathur R, Martin H, Finer S (2021) Harnessing the power of polygenic risk scores to predict type 2 diabetes and its subtypes in a high-risk population of British Pakistanis and Bangladeshis in a routine healthcare setting. MedRxiv Preprint (under review with PLoS Medicine) https://www.medrxiv.org/content/10.1101/2021.07.12.21259837v1.full.pdf.
Start Year 2020
 
Description Genes & Health metabolic research consortium 
Organisation The Wellcome Trust Sanger Institute
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution I lead a large interdisciplinary research programme, embedded in Genes & Health, that is using interdisciplinary methods to better understand the role of genetics on metabolic health in British south Asians. This work spans rare variant gene discovery (collaborating with Prof Sir Steve O'Rahilly's team in Cambridge) and the generation of ancestry-specific polygenic risk scores for for clinical application.
Collaborator Contribution University of Cambridge (Prof Sir Steve O'Rahilly) - rare gene variant discovery, functional characterisation and validation in population based cohorts University of Exeter (Richard Oram, Mike Weedon) - construction and testing of type 1 diabetes polygenic risk scores and its application to studies of diabetes misclassification London School of Hygiene and Tropical Medicine (Rohini Mathur) - advanced epidemiological analysis of real world data in British south Asians Wellcome Trust Sanger Institute (Hilary Martin) - construction and testing of polygenic risks scores KEM Hospital Pune (Ranjan Yajnik) - reference/validation south Asian populations and understanding of phenotype-genotype correlation CSIR (Giriraj Chandak) - GWAS and polygenic risk score generation in south Asian populations
Impact 1. Lam BYH*, Williamson A*, Finer S*(*joint first authors), Day F, Tadross JA,Gonçalves Soares A, Wade K, Sweeney P, Bedenbaugh MN, Porter DT, Melvin A, Ellacott KLJ, Lippert RN, Buller S, Rosmaninho-Salgado J, Dowsett GKC, Ridley KE, Xu Z, Cimino I, Rimmington D, Rainbow K, Duckett K, Holmqvist S, Khan A, Dai X, Bochukova EG, Genes & Health Research Team, Trembath RC, Martin HC, Coll AP, Rowitch DH, Wareham NJ, van Heel DA, Timpson N, Simerly RB, Ong KK, Cone, RD, Langenberg C*, Perry JRB*, Yeo GS*, O'Rahilly S*. (2021). MC3R links nutritional state to childhood growth and the timing of puberty. Nature, in press (2020-12-22599D) 2. Mathur R, Hull SA, Hodgson S, Finer S (2021). Characterisation of type 2 diabetes subgroups and their association with ethnicity and clinical outcomes: a UK real-world data study using the East London Database. British Journal of General Practice. 2022 Feb. https://doi.org/10.3399/BJGP.2021.0508 3. Pervjakova N, Moen GH, Borges MC, Ferreira T, Cook JP, Allard C, Beaumont RN, Canouil M, Hatem G, Heiskala A, Joensuu A, Karhunen V, Kwak SH, Lin FTJ, Liu J, Rifas-Shiman S, Tam CH, Tam WH, Thorleifsson G, Andrew T, Auvinen J, Bhowmik B, Bonnefond A, Delahaye F, Demirkan A, Froguel P, Haller-Kikkatalo K, Hardardottir H, Hummel S, Hussain A, Kajantie E, Keikkala E, Khamis A, Lahti J, Lekva T, Mustaniemi S, Sommer C, Tagoma A, Tzala E, Uibo R, Vääräsmäki M, Villa PM, Birkeland KI, Bouchard L, Duijn CM, Finer S, Groop L, Hämäläinen E, Hayes GM, Hitman GA, Jang HC, Järvelin MR, Jenum AK, Laivuori H, Ma RC, Melander O, Oken E, Park KS, Perron P, Prasad RB, Qvigstad E, Sebert S, Stefansson K, Steinthorsdottir V, Tuomi T, Hivert MF, Franks PW, McCarthy MI, Lindgren CM, Freathy RM, Lawlor DA, Morris AP, Mägi R. Multi-ancestry genome-wide association study of gestational diabetes mellitus highlights genetic links with type 2 diabetes. Hum Mol Genet. 2022 Feb 26: Epub ahead of print. PMID: 35220425. 4. Nongmaithem SS, Beaumont RN, Dedaniya A, Wood AR, Ogunkolade BW, Hassan Z, Krishnaveni GV, Kumaran K, Potdar RD, Sahariah SA, Krishna M, Di Gravio C, Mali ID, Sankareswaran A, Hussain A, Bhowmik BW, Khan AKA, Knight BA, Frayling TM, Finer S, Fall CH, Yajnik CS, Freathy RM, Hitman GA, Chandak GR. Babies of South Asian and European Ancestry Show Similar Associations with Genetic Risk Score for Birth Weight Despite the Smaller Size of South Asian Newborns. Diabetes. 2022 Jan. Epub ahead of print. PMID: 35061033. 5. Hodgson S, Huang Q, Sallah N, Genes & Health Research Team, Griffiths CG, Newman WG, Trembath RC, Lumbers T, Kuchenbaecker K, van Heel DA, Mathur R, Martin H, Finer S (2021) Harnessing the power of polygenic risk scores to predict type 2 diabetes and its subtypes in a high-risk population of British Pakistanis and Bangladeshis in a routine healthcare setting. MedRxiv Preprint (under review with PLoS Medicine) https://www.medrxiv.org/content/10.1101/2021.07.12.21259837v1.full.pdf.
Start Year 2020
 
Description Genes & Health metabolic research consortium 
Organisation University of Cambridge
Department Metabolic Research Laboratories
Country United Kingdom 
Sector Academic/University 
PI Contribution I lead a large interdisciplinary research programme, embedded in Genes & Health, that is using interdisciplinary methods to better understand the role of genetics on metabolic health in British south Asians. This work spans rare variant gene discovery (collaborating with Prof Sir Steve O'Rahilly's team in Cambridge) and the generation of ancestry-specific polygenic risk scores for for clinical application.
Collaborator Contribution University of Cambridge (Prof Sir Steve O'Rahilly) - rare gene variant discovery, functional characterisation and validation in population based cohorts University of Exeter (Richard Oram, Mike Weedon) - construction and testing of type 1 diabetes polygenic risk scores and its application to studies of diabetes misclassification London School of Hygiene and Tropical Medicine (Rohini Mathur) - advanced epidemiological analysis of real world data in British south Asians Wellcome Trust Sanger Institute (Hilary Martin) - construction and testing of polygenic risks scores KEM Hospital Pune (Ranjan Yajnik) - reference/validation south Asian populations and understanding of phenotype-genotype correlation CSIR (Giriraj Chandak) - GWAS and polygenic risk score generation in south Asian populations
Impact 1. Lam BYH*, Williamson A*, Finer S*(*joint first authors), Day F, Tadross JA,Gonçalves Soares A, Wade K, Sweeney P, Bedenbaugh MN, Porter DT, Melvin A, Ellacott KLJ, Lippert RN, Buller S, Rosmaninho-Salgado J, Dowsett GKC, Ridley KE, Xu Z, Cimino I, Rimmington D, Rainbow K, Duckett K, Holmqvist S, Khan A, Dai X, Bochukova EG, Genes & Health Research Team, Trembath RC, Martin HC, Coll AP, Rowitch DH, Wareham NJ, van Heel DA, Timpson N, Simerly RB, Ong KK, Cone, RD, Langenberg C*, Perry JRB*, Yeo GS*, O'Rahilly S*. (2021). MC3R links nutritional state to childhood growth and the timing of puberty. Nature, in press (2020-12-22599D) 2. Mathur R, Hull SA, Hodgson S, Finer S (2021). Characterisation of type 2 diabetes subgroups and their association with ethnicity and clinical outcomes: a UK real-world data study using the East London Database. British Journal of General Practice. 2022 Feb. https://doi.org/10.3399/BJGP.2021.0508 3. Pervjakova N, Moen GH, Borges MC, Ferreira T, Cook JP, Allard C, Beaumont RN, Canouil M, Hatem G, Heiskala A, Joensuu A, Karhunen V, Kwak SH, Lin FTJ, Liu J, Rifas-Shiman S, Tam CH, Tam WH, Thorleifsson G, Andrew T, Auvinen J, Bhowmik B, Bonnefond A, Delahaye F, Demirkan A, Froguel P, Haller-Kikkatalo K, Hardardottir H, Hummel S, Hussain A, Kajantie E, Keikkala E, Khamis A, Lahti J, Lekva T, Mustaniemi S, Sommer C, Tagoma A, Tzala E, Uibo R, Vääräsmäki M, Villa PM, Birkeland KI, Bouchard L, Duijn CM, Finer S, Groop L, Hämäläinen E, Hayes GM, Hitman GA, Jang HC, Järvelin MR, Jenum AK, Laivuori H, Ma RC, Melander O, Oken E, Park KS, Perron P, Prasad RB, Qvigstad E, Sebert S, Stefansson K, Steinthorsdottir V, Tuomi T, Hivert MF, Franks PW, McCarthy MI, Lindgren CM, Freathy RM, Lawlor DA, Morris AP, Mägi R. Multi-ancestry genome-wide association study of gestational diabetes mellitus highlights genetic links with type 2 diabetes. Hum Mol Genet. 2022 Feb 26: Epub ahead of print. PMID: 35220425. 4. Nongmaithem SS, Beaumont RN, Dedaniya A, Wood AR, Ogunkolade BW, Hassan Z, Krishnaveni GV, Kumaran K, Potdar RD, Sahariah SA, Krishna M, Di Gravio C, Mali ID, Sankareswaran A, Hussain A, Bhowmik BW, Khan AKA, Knight BA, Frayling TM, Finer S, Fall CH, Yajnik CS, Freathy RM, Hitman GA, Chandak GR. Babies of South Asian and European Ancestry Show Similar Associations with Genetic Risk Score for Birth Weight Despite the Smaller Size of South Asian Newborns. Diabetes. 2022 Jan. Epub ahead of print. PMID: 35061033. 5. Hodgson S, Huang Q, Sallah N, Genes & Health Research Team, Griffiths CG, Newman WG, Trembath RC, Lumbers T, Kuchenbaecker K, van Heel DA, Mathur R, Martin H, Finer S (2021) Harnessing the power of polygenic risk scores to predict type 2 diabetes and its subtypes in a high-risk population of British Pakistanis and Bangladeshis in a routine healthcare setting. MedRxiv Preprint (under review with PLoS Medicine) https://www.medrxiv.org/content/10.1101/2021.07.12.21259837v1.full.pdf.
Start Year 2020
 
Description Genes & Health metabolic research consortium 
Organisation University of Exeter
Country United Kingdom 
Sector Academic/University 
PI Contribution I lead a large interdisciplinary research programme, embedded in Genes & Health, that is using interdisciplinary methods to better understand the role of genetics on metabolic health in British south Asians. This work spans rare variant gene discovery (collaborating with Prof Sir Steve O'Rahilly's team in Cambridge) and the generation of ancestry-specific polygenic risk scores for for clinical application.
Collaborator Contribution University of Cambridge (Prof Sir Steve O'Rahilly) - rare gene variant discovery, functional characterisation and validation in population based cohorts University of Exeter (Richard Oram, Mike Weedon) - construction and testing of type 1 diabetes polygenic risk scores and its application to studies of diabetes misclassification London School of Hygiene and Tropical Medicine (Rohini Mathur) - advanced epidemiological analysis of real world data in British south Asians Wellcome Trust Sanger Institute (Hilary Martin) - construction and testing of polygenic risks scores KEM Hospital Pune (Ranjan Yajnik) - reference/validation south Asian populations and understanding of phenotype-genotype correlation CSIR (Giriraj Chandak) - GWAS and polygenic risk score generation in south Asian populations
Impact 1. Lam BYH*, Williamson A*, Finer S*(*joint first authors), Day F, Tadross JA,Gonçalves Soares A, Wade K, Sweeney P, Bedenbaugh MN, Porter DT, Melvin A, Ellacott KLJ, Lippert RN, Buller S, Rosmaninho-Salgado J, Dowsett GKC, Ridley KE, Xu Z, Cimino I, Rimmington D, Rainbow K, Duckett K, Holmqvist S, Khan A, Dai X, Bochukova EG, Genes & Health Research Team, Trembath RC, Martin HC, Coll AP, Rowitch DH, Wareham NJ, van Heel DA, Timpson N, Simerly RB, Ong KK, Cone, RD, Langenberg C*, Perry JRB*, Yeo GS*, O'Rahilly S*. (2021). MC3R links nutritional state to childhood growth and the timing of puberty. Nature, in press (2020-12-22599D) 2. Mathur R, Hull SA, Hodgson S, Finer S (2021). Characterisation of type 2 diabetes subgroups and their association with ethnicity and clinical outcomes: a UK real-world data study using the East London Database. British Journal of General Practice. 2022 Feb. https://doi.org/10.3399/BJGP.2021.0508 3. Pervjakova N, Moen GH, Borges MC, Ferreira T, Cook JP, Allard C, Beaumont RN, Canouil M, Hatem G, Heiskala A, Joensuu A, Karhunen V, Kwak SH, Lin FTJ, Liu J, Rifas-Shiman S, Tam CH, Tam WH, Thorleifsson G, Andrew T, Auvinen J, Bhowmik B, Bonnefond A, Delahaye F, Demirkan A, Froguel P, Haller-Kikkatalo K, Hardardottir H, Hummel S, Hussain A, Kajantie E, Keikkala E, Khamis A, Lahti J, Lekva T, Mustaniemi S, Sommer C, Tagoma A, Tzala E, Uibo R, Vääräsmäki M, Villa PM, Birkeland KI, Bouchard L, Duijn CM, Finer S, Groop L, Hämäläinen E, Hayes GM, Hitman GA, Jang HC, Järvelin MR, Jenum AK, Laivuori H, Ma RC, Melander O, Oken E, Park KS, Perron P, Prasad RB, Qvigstad E, Sebert S, Stefansson K, Steinthorsdottir V, Tuomi T, Hivert MF, Franks PW, McCarthy MI, Lindgren CM, Freathy RM, Lawlor DA, Morris AP, Mägi R. Multi-ancestry genome-wide association study of gestational diabetes mellitus highlights genetic links with type 2 diabetes. Hum Mol Genet. 2022 Feb 26: Epub ahead of print. PMID: 35220425. 4. Nongmaithem SS, Beaumont RN, Dedaniya A, Wood AR, Ogunkolade BW, Hassan Z, Krishnaveni GV, Kumaran K, Potdar RD, Sahariah SA, Krishna M, Di Gravio C, Mali ID, Sankareswaran A, Hussain A, Bhowmik BW, Khan AKA, Knight BA, Frayling TM, Finer S, Fall CH, Yajnik CS, Freathy RM, Hitman GA, Chandak GR. Babies of South Asian and European Ancestry Show Similar Associations with Genetic Risk Score for Birth Weight Despite the Smaller Size of South Asian Newborns. Diabetes. 2022 Jan. Epub ahead of print. PMID: 35061033. 5. Hodgson S, Huang Q, Sallah N, Genes & Health Research Team, Griffiths CG, Newman WG, Trembath RC, Lumbers T, Kuchenbaecker K, van Heel DA, Mathur R, Martin H, Finer S (2021) Harnessing the power of polygenic risk scores to predict type 2 diabetes and its subtypes in a high-risk population of British Pakistanis and Bangladeshis in a routine healthcare setting. MedRxiv Preprint (under review with PLoS Medicine) https://www.medrxiv.org/content/10.1101/2021.07.12.21259837v1.full.pdf.
Start Year 2020
 
Description Genes 2 Mental Health Network (G2MH) 
Organisation National Institutes of Health (NIH)
Department National Institute of Mental Health (NIMH)
Country United States 
Sector Public 
PI Contribution Increased awareness of the rick of physical and mental health multimorbidity in people with Copy Number Variation.
Collaborator Contribution Opportunities for collaboration with a large NIMH-led network of international researchers studying rare genetic variation and mental health. The G2MH network also offers opportunities for replication of our findings in a large international data set.
Impact As above
Start Year 2019
 
Description Genes and Health (G&H) Study 
Organisation East London Genes and Health
Country United Kingdom 
Sector Academic/University 
PI Contribution Enhanced links between research institutions: Cardiff University, Leeds University, Bristol University, Copenhagen University, Exeter University, Wellcome Sanger Institute. Enhanced links between research cohorts Avon Longitudinal Study of Parents and Children (ALSPAC), Born in Bradford (BiB) and Danish Integrative Psychiatric Research (iPSYCH) studies.
Collaborator Contribution The G&H cohort is one of the five research cohorts our Research Collaborative will conduct research in. G&H/ Queen Mary University London researchers have made significant contributions to the development of our Research Collaborative grant proposal.
Impact Collaborative grant proposal submitted.
Start Year 2020
 
Description Intellectual Disability and Mental Health: Assessing Genomic Impact on Neurodevelopment (IMAGINE) 
Organisation University College London
Department Institute of Child Health
Country United Kingdom 
Sector Academic/University 
PI Contribution I am an IMAGINE-ID co-investigator, leading the face-to-face phenotyping WP (WP2) of this grant. Insights we gained whilst developing our Research Collaborative proposal have been shared with the IMAGINE-ID team during our investigator meetings.
Collaborator Contribution The IMAGINE-ID team follows young people with genetic conditions linked intellectual disability over time. The insights IMAGINE-ID is generating on these young people's longitudinal development has impacted on our planning of the Research Collaborative project.
Impact The links with the NHS, charities, politicians we have developed as part of IMAGINE-ID are benefitting our Research Collaborative. The collaboration is multidisciplinary, involving mental health, physical health, epidemiology, genetics.
Start Year 2014
 
Description International consortium for the study of early life multimorbidity using registry-linked cohort data (EMERGENT project) 
Organisation Norwegian Institute of Public Health
Country Norway 
Sector Public 
PI Contribution Mutual exchange of ideas and plans to enhance the research both sites are conducting into multimorbidity
Collaborator Contribution Mutual exchange of ideas and plans to enhance the research both sites are conducting into multimorbidity
Impact Attendance of brainstorming meeting with the EMERGENT research team in Oslo, Norway, to plan together the start of the EMERGENT project.
Start Year 2024
 
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 MLTC-M Community of Practice in ECR training on best practice patient and public involvement with diverse populations 
Organisation University of Birmingham
Department Institute of Applied Health Research
Country United Kingdom 
Sector Academic/University 
PI Contribution Conceptual contribution in developing the idea, plans and recruitment of potential network members to support the grant application to the Medical Research Council in February 2022, including from the LINC collaborative PPI lead (Rupert Payne), PPI coordinator (Julie Clayton) and PPI and impact officer (Lowri O'Donovan), and PPI co-applicants Jane Sprackman and Shahid Khan. Once it was funded, we have all been involved in developing plans for, and delivering, Community of Practice (CoP) activities.
Collaborator Contribution University of Birmingham postdoctoral fellow Dr Stephanie Hanley and colleagues are the principal leads for the Community of Practice and have taken responsibility for delivering all CoP activities.
Impact Initial face-to-face Community of Practice (CoP) workshop on 22 November 2023 in Birmingham, which brought together PPI contributors, PPI leads and Early Career Researchers (ECRs) from all the MRC-funded multimorbidity collaboratives including 5 postdoctoral fellows and a PhD student from LINC. This was the start of training and resource-building, to develop the PPI knowledge and skills of ECRs and network relationships. This was followed by an online workshop on 27 February 2023 in which we are starting to build plans for future activities, and prioritise goals and objectives for attendees. Final report "Communities of Practice as a method for Public Involvement in Data Intensive Health Research" is under review with the Journal of Participatory Research Methods (update 4 March 2025)
Start Year 2022
 
Description MoBa 
Organisation Norwegian Mother and Child Cohort (MoBa)
Country Norway 
Sector Public 
PI Contribution We have discussed opportunities for collaboration on physical and mental health multimorbidity. Cardiff has advised MoBa researchers on research measures and ethics applications for studying individuals with rare genetic disorders.
Collaborator Contribution MoBA researchers have written letters of support for our Research Collaborative application. If our application is successful, we will work together. This will offer opportunities for future collaborative grant proposals as well as joint research papers.
Impact The collaboration is multidisciplinary, involving mental health, physical health, epidemiology, genetics.
Start Year 2020
 
Description NIHR AiM Development Award (NIHR202635) 
Organisation Newcastle University
Country United Kingdom 
PI Contribution Characterising the dynamic inter-relationships between polypharmacy and multiple long-term conditions. Using artificial intelligence (AI) to map patient journeys into multimorbidity clusters across the UK This is a recently awarded development grant awarded by NIHR, on which I am Co-Investigator. This NIHR grant is integrating with my Multimorbidity clusters, trajectories and genetic risk, in British south Asians award, using common methodology to define conditions for inclusion in a data-driven multimorbidity cluster analysis. The two grants are complementary, and synergistic - the MRC award generating outputs primarily on ethnicity-associated variation and genetic aetiology of multimorbidity, and the NIHR award developing an AI infrastructure to expand the scope of analyses and investigate the complex and dynamic relationship between multimorbidity and polypharmacy.
Collaborator Contribution The partnership has led to the successful NIHR award, and is contributing additional datasets (UK Biobank) and methodology (AI).
Impact Further grant funding: NIHR. "Using artificial intelligence (AI) to characterize the dynamic inter-relationships between MUltiple Long-term condiTIons and PoLYpharmacy and across diverse UK populations and inform health care pathways (AI-MULTIPLY)". AIM Research Collaboration. NIHR 31672. April 2022-November 2025, £2,971,000. I am Co-Investigator and Work Package Lead
Start Year 2021
 
Description National Centre for Mental Health 
Organisation National Center for Mental Health (NCMH)
Country Philippines 
Sector Hospitals 
PI Contribution The NCMH Director is a collaborator on our Research Collaborative grant. Our Collaborative grant will employ a PPI and Impact Officer. This officer will be embedded within NCMH. This will offer new opportunities for NCMH to be able to link in with the PPI and impact efforts of our project as well as the PPI and impact efforts at the various cohorts that are part of our Collaborative (in particularly the Genes and Health (G&H) cohort at Queen Mary University in London; the Avon Longitudinal Study of Parents and Children (ALSPAC) cohort in Bristol University; and the Born in Bradford (BiB) cohort Leeds University. I am a PI within NCMH.
Collaborator Contribution We will benefit from the extensive expertise on mental health existing within NCMH. We will benefit from the highly successful, vibrant NCMH outreach and engagement activities. Our PPI and impact Officer will work together with this team at NCMH. We have already received input on our PPI and impact grant sections from NCMH. The NCMH Intervention Development Coordinator has been part of and made very useful contributions to the PPI/ impact meetings we have organized to develop the PPI/ impact strategies for our Research Collaborative. NCMH has also facilitated the discussions that we have had about our Collaborative grant proposal with Health Care Research Wales. NCMH will help us with our outreach activities and ensure we reach wide-ranging audiences with our findings, including through podcasts, Youtube, radio, TV, other media.
Impact This is a multidisciplinary collaboration, involving mental health (including intellectual disability), physical health, genetics, PPI, impact. Outputs that have already resulted from this collaboration include input in the Research Collaborative grant proposal, facilitation of links with Welsh Government and opportunities for outreach through the media.
Start Year 2017
 
Description The MINDDS (Maximising Impact of research in Neuro-Developmental DisorderS) COST Pan-EU network. 
Organisation European Cooperation in Science and Technology (COST)
Department COST Action
Country Belgium 
Sector Public 
PI Contribution I am Executive Committee Member and have been Leader of Working Group 2. I have led workshop on rare genetic conditions and mental health for clinicians and researchers throughout the EU.
Collaborator Contribution Our findings on the impact of rare genetic variants on physical and mental health multimorbidity are fed back into MINDDS.
Impact Increased awareness of physical and mental health multimorbidity risk in individuals with rare genetic disorders.
Start Year 2017
 
Description Turing AIM (AI for Multiple long-term conditions) Research Support Facility 
Organisation Alan Turing Institute
Country United Kingdom 
Sector Academic/University 
PI Contribution Scientific and clinical subject knowledge and methodological expertise
Collaborator Contribution Methodological expertise
Impact Nil yet
Start Year 2022
 
Description Wolfson Centre for Applied Research 
Organisation Bradford Institute for Health Research (BIHR)
Department Born in Bradford
Country United Kingdom 
Sector Public 
PI Contribution Our Research Collaborative has discussed our plans with the Wolfson Centre for Applied Research and thus increased awareness of the role of childhood risk factors for the development of internalizing disorder and cardiometabolic disorder multimorbidity later in life.
Collaborator Contribution The Wolfson Wolfson Centre for Applied Research will contribute to our Research Collaborative expertise in how health inequalities in young people can be reduced and guidance in which early-years interventions which are most effective.
Impact This collaboration will provide our Research Collaborative with pathways into clinical impact. The collaboration is multidisciplinary, involving mental health, physical health, epidemiology, genetics.
Start Year 2020
 
Description Wolfson Centre for Young People's Mental Health 
Organisation Cardiff University
Department Wolfson Centre for Young People's Mental Health
Country United Kingdom 
Sector Academic/University 
PI Contribution The Cardiff Wolfson Centre has an interest in the longitudinal links between internalizing disorder and physical health disorder. We have agreed that we will have shared seminars, so that the Wolfson Centre stays up-to-date about our findings and that our findings can inform their research strategy. We will also have shared statistical workshops and shared dissemination events.
Collaborator Contribution The two Cardiff Wolfson PIs are collaborators on our Research Collaborative. They have expertise in the development of depression over time in young people which they will bring to our project. They are developing evidence-based interventions for internalizing disorder for young people and at-risk families. They are also developing school-based programs to promote positive mental health in young people. They will share best practice about these programs with us. We will also have shared statistical workshops and shared dissemination events.
Impact The Cardiff Wolfson Centre Directors are collaborators on our Research Collaborative grant proposal. We have discussed common interests together and plan to collaborate. This will be a multidisciplinary collaboration involving mental health, physical health, genetics, epidemiology, intervention.
Start Year 2021
 
Description iPSYCH 
Organisation The Lundbeck Foundation Initiative for Integrative Psychiatric Research
Country Denmark 
Sector Academic/University 
PI Contribution Enhanced links between research institutions: Cardiff University, Leeds University, Queen Mary University London, Bristol University, Exeter University, Wellcome Sanger Institute. Enhanced links between research cohorts Genes and Health (G&H); Born in Bradford (BiB) and Avon Longitudinal Study of Parents and Children (ALSPAC).
Collaborator Contribution The iPSYCH cohort is one of the five research cohorts our Research Collaborative will conduct research in. iPSYCH/ Copenhagen researchers have made significant contributions to the development of our Research Collaborative grant proposal.
Impact Collaborative grant proposal submitted.
Start Year 2020
 
Description A blog on the LINC website: The value of public engagement: a researcher's perspective 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact To raise awareness of the importance of the public voice in research projects and the role of the PPI advisory group. This was also an essential piece of work with follow-up tweets raise awareness of the PPI group, to attract new members. This article increased LINC webpages footfall.
Year(s) Of Engagement Activity 2024
URL https://www.cardiff.ac.uk/news/view/2833486-the-value-of-public-engagement-a-researchers-perspective
 
Description A talk/presentation to the PPI group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact I attended a PPI working group meeting in Cardiff to present the initial findings of my research, which led to questions and in-depth discussion generating lots of interest in the subject matter. The group gave recommendations for the focus of future analysis and we made plans to collaborate on materials (leaflets, blog posts, conferences) which aim to raise awareness of the research. The PPI group fed back that they felt that the topic was extremely important to investigate in relation to multimorbidity and all felt that it was relevant to them either personally or professionally, showing the potential impact of the research.
Year(s) Of Engagement Activity 2024
 
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 Article in Very well health 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Media attention about rare genetic disorders and mental health
Year(s) Of Engagement Activity 2021
URL https://www.verywellhealth.com/autism-diagnosing-criteria-genetic-conditions-5095503
 
Description Blog - International data conference - Chicago - Dr Megan Wood and Lauren Benger 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A blog to provide information on the most recent findings of their research through an international audience. This also discussed how they had developed new skills and networked with new colleagues and contacts. The blog provides information to a national audience further increasing the awareness of the LINC project whilst drawing attention to Lauren Benger and Dr Megan Wood's specific research.
Year(s) Of Engagement Activity 2024
URL https://www.cardiff.ac.uk/news/view/2878112-researchers-attend-international-data-conference-and-sha...
 
Description Blog provided by Prof Mark Mon Williams and Dr Megan Wood - National LINC team publish report tackling education and health inequities through policy changes 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact A blog on the consequences of health inequality through a comparison between the North and South of England. This blog explains that an All-Party Parliamentary Group (APPG) is seeking to understand why these inequalities exist so that political parties can work together to improve outcomes for children born in these areas. LINC members then proceeded to contribute to 12 reports to the APPG on different themes with children and young people.
Year(s) Of Engagement Activity 2024
URL https://www.cardiff.ac.uk/news/view/2786555-changing-policy-tackling-education-and-health-inequity
 
Description Briefing to DfE and Westminster 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Briefing on children with CNVs in education setting and LINC programme.
Year(s) Of Engagement Activity 2021
 
Description British Society of Immunology seminar series 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation about physical and mental health multimorbidity and the LINC multimorbidity research programme and the possible role of inflammation in internalizing and cardiometabolic disorder.
Year(s) Of Engagement Activity 2022
 
Description Celebrating Child Health Research in South Yorkshire 2025 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The event was titled 'Celebrating Child Health Research in South Yorkshire: SCYPHeR one year on and TCHC Showcase', at INOX Dine in Sheffield. Colleagues from across the region were invited to attend. SCYPHeR was officially launched in February 2024, so they invited colleagues to celebrate their achievements thus far and to discuss what the future of child health research might look like in South Yorkshire.
Year(s) Of Engagement Activity 2025
URL https://www.sheffield.ac.uk/scypher/news/south-yorkshire-sets-pace-collaboration-improve-child-healt...
 
Description Chairing conference session 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Session at the 'Future MINDDS: Recent advances and future directions for research of Neurodevelopmental Disorders (NDD) associated with pathogenic CNV (Copy Number Variants) conference, EU COST action funded. Cardiff
Year(s) Of Engagement Activity 2022
URL https://mindds.eu/activities/meetings/
 
Description Co-organisation of conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Future MINDDS: Recent advances and future directions for research of Neurodevelopmental Disorders (NDD) associated with pathogenic CNV (Copy Number Variants) conference, EU-COST-funded. Cardiff
Year(s) Of Engagement Activity 2022
URL https://mindds.eu/activities/meetings/
 
Description Dementias Platform UK - Translation Conference 2023 
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 This was a major conference marking the contribution and potential of DPUK related work to contribution to translational outputs. The opportunity to present cross-cohort research was presented by a representative of the LINC team from the University of Bristol.
Year(s) Of Engagement Activity 2023
URL https://www.dementiasplatform.uk/research-hub/translation-2023
 
Description Department of Education 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact We discussed the plans for our Research Collaborative with the DoE and they wrote a letter to support our project.
Year(s) Of Engagement Activity 2021
 
Description Discussions with Health and Care Research Wales 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact We discussed with Health and Care Wales representatives our plans for our Research Collaborative grant. We received confirmation that proposal was interesting and addressed a clear area of need.
Year(s) Of Engagement Activity 2021
 
Description Discussions with rare chromosome support charity Unique 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact We discussed the plans for our Research Collaborative with Unique and they confirmed this is an important area of research and they wrote a letter to support our project.
Year(s) Of Engagement Activity 2021
 
Description Discussions with support charity CEREBRA 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact We discussed the plans for our Research Collaborative with CEREBRA and they confirmed this is an important area of research and they wrote a letter to support our project.
Year(s) Of Engagement Activity 2021
 
Description Dr Megan Wood - Co-authored article for Greater Manchester Poverty Action (GMPA) newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Co-authored article for monthly newsletter
Year(s) Of Engagement Activity 2023
URL https://manchestercommunitycentral.org/sites/manchestercommunitycentral.org/files/GMPA%20Newsletter%...
 
Description Dr Megan Wood - Interview on BCB radio (Bradford Community Broadcasting) 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 20 min Radio interview by Dr Megan Wood about Child of the North Autism report.
Year(s) Of Engagement Activity 2024
URL https://www.n8research.org.uk/media/CoTN_Autism_Report_1.pdf
 
Description Dr Megan Wood - Presented at Connected Yorkshire PPI meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation of EYFSP analyses to PPI group for Connected Yorkshire.
Year(s) Of Engagement Activity 2023
 
Description Dr Megan Wood - Presented poster at UKPRP conference in Edinburgh 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Presented poster at conference. Discussed findings with delegates as well as networking.
Year(s) Of Engagement Activity 2023
 
Description Dr Ruby Tsang - Presentation at Bordeaux-Bristol Public Health Symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation on Dr Tsang's Research work which sparked discussion and interest in the field of multimorbidity.
Year(s) Of Engagement Activity 2024
 
Description Dr Ruby Tsang - Presentation at Edinburgh-Bristol meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dr Ruby Tsang presented recent findings on inflammatory markers in the blood to multimorbidity experts.
Year(s) Of Engagement Activity 2024
 
Description Dr Ruby Tsang's - Presentation to LINC's PPI advisory group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Communicated latest research findings to PPI group, and received feedback from them.
Year(s) Of Engagement Activity 2023
 
Description Dr Ruby Tsang's conference poster at Dementia's platform UK 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Poster presentation at Dementias Platform UK Translation 2023 Conference.
Year(s) Of Engagement Activity 2023
 
Description Dr Ruby Tsang: Presentation at ALSPAC staff update meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A presentation to internal study members on most recent LINC findings.
Year(s) Of Engagement Activity 2024
 
Description Editorial team of special edition of 'Frontiers in Psychiatry' 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Special edition on a rare genetic condition.
Year(s) Of Engagement Activity 2022
 
Description Feedback request from the PPI advisory group on any abstracts, posters and reports to the funding bodies. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact PPI advisory group provided comments, feedback and recommendations to researchers on their abstracts, posters and reports, specifically whether the information was suitable for a public audience. This raised numerous points such as the use of acronyms and terminologies which aren't commonly known. It also raised questions around the necessity to liaise with charitable organisations such as Autistica and Unique to develop a greater understanding of appropriate terminology and how we present the information to them.
Year(s) Of Engagement Activity 2025
 
Description Festival of Social Science event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact We secured funding from the Economic and Social Research Council to run an event for pupils in Cardiff as part of the annual ESRC Festival of Social Science. 40 pupils from 4 secondary schools attended the event which focused on public health and genetic and environmental contributors to health across the lifespan. Pupils listened to talks and took part in activities, including evaluation of public health campaigns and a debating competition. Speakers included members of the research team, academic genetic counsellors and a local barrister. Students showed good engagement and school feedback was positive. Pupils' feedback reported their thoughts about their future careers had broadened from attending. The speakers and schools were interested in future involvement and volunteered to work with the team to widen access to future events to other pupils.
Year(s) Of Engagement Activity 2023
URL https://www.cardiff.ac.uk/news/view/2785104-what-do-young-people-think-will-make-the-uk-a-healthier-...
 
Description Funders meeting with the LINC consortium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact LINC Collaborative meeting with NIHR/ DHSC to discuss future funding priorities for multimorbidity research.
Year(s) Of Engagement Activity 2024
 
Description Genetic Alliance 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact We discussed the plans for our Research Collaborative with Genetic Alliance and they wrote a letter to support our project.
Year(s) Of Engagement Activity 2021
 
Description Health research information event with Social Action for Health community, Tower Hamlets, London, September 2024 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact engagement to understand views of community groups including local Bangladeshi community about genetic risk, lifestyle risk factors, behaviour change, in relation to multiple long-term conditions
Year(s) Of Engagement Activity 2024
URL https://www.safh.org.uk/
 
Description Invited blog post for the Mental Elf - Prof Nic Timpson and Dr Ruby Tsang 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Blog post titled "Unravelling the link between youth inflammation patterns and poor health in adulthood" summarising findings from a recent paper. The Mental Elf blog is a website that invites mental health experts to post summaries of evidence-based research relevant to mental health practice.
Year(s) Of Engagement Activity 2024
URL https://www.nationalelfservice.net/mental-health/
 
Description Invited by Liz Twist MP and Genetic Alliance UK to the annual parliamentary reception held to recognise Rare Disease Day, Terrace Pavilion, House of Commons. 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Increase awareness of rare genetic conditions and work towards improving care and support for those affected and their families.
Year(s) Of Engagement Activity 2025
 
Description Invited presentation on future of research into rare genomic variants. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation at the Future MINDDS: Recent advances and future directions for research of Neurodevelopmental Disorders (NDD) associated with pathogenic CNV (Copy Number Variants), conference, EU COST action-funded, Cardiff.
Year(s) Of Engagement Activity 2022
 
Description Knowledge mobilisation workshop with Post Docs: Dr Nabila Ali, Dr Ioanna Katzourou, Dr Daniel Stow, PhD Student Lauren Benge and PPI Lead Dr Julie Clayton. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A workshop for the LINC team together with our Patient/Public Involvement (PPI) advisory group to define key messages and impact goals arising from the LINC project, to take forwards for planning future stakeholder engagement.
Year(s) Of Engagement Activity 2024
 
Description LINC PPI group interaction - with public and study participant representatives. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact LINC PPI group interaction - with public and study participant representatives. This was a specific PPI exercise to ensure the alignment of LINC research to the understanding and interests/concerns of study participants and the public. A small event bringing together researchers from LINC and the public/participant members of the study allow feedback, response and alignment.
Year(s) Of Engagement Activity 2023
 
Description LINC PPI group interaction - with public and study participant representatives. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact LINC PPI group interaction - with public and study participant representatives. This was a specific PPI exercise to ensure the alignment of LINC research to the understanding and interests/concerns of study participants and the public. A small event bringing together researchers from LINC and the public/participant members of the study allow feedback, response and alignment.
Year(s) Of Engagement Activity 2022
 
Description Lectio Magistralis at the Festival Della Scienza, Genoa, Italy. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Presentation at Science Festival for ~300 people.
Year(s) Of Engagement Activity 2020
 
Description Media piece 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Charity Cerebra reports on our research February Newsflash: Making waves with the BBC! (cerebra.org.uk).
Year(s) Of Engagement Activity 2023
URL https://cerebra.org.uk/?mailpoet_router&endpoint=view_in_browser&action=view&data=WzE0OSwiNDYzMWU1MT...
 
Description Meeting with Dept of Education & Dept of Health and Social Care 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact To share outcomes of the 'autism and neurodiversity' projects being undertaken in the Opportunity Areas and to provide insights into the learning from the projects. Most importantly, the meeting will shared learning about the way that the scientific insights have been applied to transform autism services by working with and through schools. To introduce LINC and it's aims to attendees and to establish a more formal Stakeholder Policy Group for the project which will serve to inform LINCs research and to influence practice and policy based on LINC's findings. Attended with Prof Mark Mon-Williams.
Year(s) Of Engagement Activity 2023
 
Description Multi-stakeholder workshop on rare conditions and accessing mental health services. 
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 Organised by Russell Viner, Department for Education Chief Scientific Advisor, a Department of Health and Social Care workshop on access to mental health services in children and young people with rare conditions and to raise awareness of these rare conditions.
Year(s) Of Engagement Activity 2024
 
Description Multimorbidity Scoping Workshop at Cardiff University 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Workshop at Cardiff University brining together researchers and clinicians interested in the study of multimorbidity, where Prof van den Bree gave a presentation on LINC.
Year(s) Of Engagement Activity 2022
 
Description Online presentation about the findings from our research into individuals with rare genetic conditions 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation about our research findings to date on the development, mental health, cognition of children and young people with rare genetic conditions and the mental health and experiences with getting support for their child of their parents. Recorded and available on website of international charity Unique as well as on Youtube.
Year(s) Of Engagement Activity 2025
URL https://youtu.be/H84NXBO5hyA
 
Description PPI Group Meetings 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Continued quarterly meetings with LINC's PPI Group. Groups have been attended by several members of the LINC research team, including all post-docs and PhD students, and principal investigators. Team members will report back to the PPI group this year to share how their input has been incorporated into LINC research and informed findings. The group has also helped advise on the creation of communication materials. The current focus of the group is to create a LINC animation to explain and raise awareness of multimorbidity to wider audiences. Feedback from the PPI inspired the ESRC Festival of Social Sciences event due to many conversations we'd had with the group about how to communicate health risk to different age groups, particularly young people. These conversations continue, as well as those about the importance of communicating risk to different ethnic groups.
Year(s) Of Engagement Activity 2022,2023,2024
 
Description PPI Group Meetings 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Continued quarterly meetings with LINC's PPI Group. Groups have been attended by several members of the LINC research team, including all post-docs and PhD students, and principal investigators. Team members will report back to the PPI group this year to share how their input has been incorporated into LINC research and informed findings. The group has also helped advise on the creation of communication materials. The current focus of the group is to create a LINC animation to explain and raise awareness of multimorbidity to wider audiences. Feedback from the PPI inspired the ESRC Festival of Social Sciences event due to many conversations we'd had with the group about how to communicate health risk to different age groups, particularly young people. These conversations continue, as well as those about the importance of communicating risk to different ethnic groups.
Year(s) Of Engagement Activity 2022,2023,2024
 
Description PPI group workshop on frailty with Dr Daniel Stow 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Daniel Stow provided some information on the overlap between multimorbidity and frailty to our PPI group and his interest in applying for a fellowship looking at the relationshhip between the two. During this session, the PPI group were asked to provide information to feed into a mentimeter on what frailty means to them. Daniel explained that the evidence suggests that there is something happening that may be related to ageing in midlife, linked to multimorbidity which can then lead to cause frailty. There were detailed discussions and debates around how frailty is defined, the use of the frailty index and who is at risk of developing frailty when they are younger, again linking to multimorbidity. Daniel is taking this feedback on board for his future research planning and his next task is to provide a follow-up session with PPI, using a 'you said, I did' approach to ensure their feedback is captured and fed back to them.

4. Questions to ask the group:


· How does frailty develop alongside multimorbidity?

· Who is at risk of developing frailty when they are younger? (40-65)

· Is frailty in younger groups functionally and/or biologically the same as frailty in later life?

· Can we predict who will become frail?

· What can we do to prevent frailty developing in younger groups?
Year(s) Of Engagement Activity 2025
 
Description Panel Member at Born in Bradford Festival 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Took part in Expert Panel discussing 'The role of education in improving outcomes for children and young people'.
Year(s) Of Engagement Activity 2023
URL https://borninbradford.nhs.uk/news-events/events/bibfest-2023/
 
Description Participation at the Healthier Together Conference in Birmingham - Dr Nabila Ali, Prof Mark Mon-Williams, Dr Megan Wood and Kayleigh McCulloch 
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 On October 4th 2024, Healthier Together convened a meeting in Birmingham that asked: "How can our organisations and our collective individual action support the new government in its Opportunity Mission? The meeting brought together - for the first time - the Royal College of Paediatrics and Child Health with Child of the North and the Centre for Young Lives, with WHAM, with Born in Bradford, with the Institute of Health Visiting and many other organisations committed to building a country that works for all children and young people. The delegates explored how we can support children through the life course from pregnancy, through 0-4 years, 5-11 years, and 12-18 years. We explored innovative approaches to improving child health and wellbeing across these developmental stages and pledged to work together to give every child and young person throughout the UK the best possible start in life. This also included commencing a petition for the above.
Year(s) Of Engagement Activity 2024
URL https://www.what0-18.nhs.uk/about-us/healthier-together-conference/healthier-together-2024
 
Description Participation in two PPIE workshops 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Discussed LINC objectives and analysis - discussed ideas of exposures and outcomes, and what the most meaningful outcomes to capture in longitudinal research on multi morbidity could be. Focus on outcomes other than death - e.g. QALY / DALY / additional conditions arising after onset of multi morbidity
Year(s) Of Engagement Activity 2023
 
Description Piece on our published work 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Piece about our research in the newsletter of a national charity for families with a child with a brain condition.
Year(s) Of Engagement Activity 2023
URL https://cerebra.org.uk/?mailpoet_router&endpoint=view_in_browser&action=view&data=WzE0OSwiNDYzMWU1MT...
 
Description Poster presentation at the Multiple Long-term Conditions (MLTC) Symposium for Analysis of Multimorbidity Research, Leicester- Dr Nabila Ali 
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 Presented a poster titled " Academic achievement and neurodevelopmental traits in children with rare genetic variants: findings from the multi-ethnic population-based Born in Bradford (BiB) cohort"
Year(s) Of Engagement Activity 2024
 
Description Presentation at 'What I know best' congress, Rome, Italy 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation to Clinical Geneticists and other healthcare workers and those interested in genetics to provide an update of the field
Year(s) Of Engagement Activity 2021
 
Description Presentation at All Wales Medical Genetic Service's Psychiatry & Genetics multidisciplinary team meetings 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation to provide an update on our research findings
Year(s) Of Engagement Activity 2021
 
Description Presentation at rare chromosomal disorder MaxAppeal meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation about our research.
Year(s) Of Engagement Activity 2020
 
Description Presentation on LINC multimorbidity Collaborative 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A presentation about our LINC Multimorbidity Collaborative to the DEMISTIFY Multimorbidity Collaborative followed by discussions about opportunities for further collaboration.
Year(s) Of Engagement Activity 2023
 
Description Presentation to Bristol Cleft Collective 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation about our research findings of the phenotypic features associated with having a rare chromosomal deletion or duplication (as Copy Number Variant).
Year(s) Of Engagement Activity 2023
 
Description Presentation to Bristol Older People's Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact To raise awareness about health research on conditions related to aging, and opportunities to get involved - as PPI advisors or as study participants. The outcome was a hybrid event and new relationship building with members of the public and potential new PPI contributors, and new working relationship with the staff of Bristol Older People's Forum, who are interested in holding more such engagement events in future.
Year(s) Of Engagement Activity 2023
 
Description Presentation to Bristol Older People's Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact To raise awareness about health research on conditions related to aging, and opportunities to get involved - as PPI advisors or as study participants. The outcome was a hybrid event and new relationship building with members of the public and potential new PPI contributors, and new working relationship with the staff of Bristol Older People's Forum, who are interested in holding more such engagement events in future.
Year(s) Of Engagement Activity 2023
 
Description Presentation to Cardiff MRC Centre for Neuropsychiatric Genetics and Genomics 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Presentation about the LINC multimorbidity programme to the Cardiff MRC Centre for Neuropsychiatric Genetics and Genomics, to increase awareness amongst academics.
Year(s) Of Engagement Activity 2022
 
Description Presentation to Cardiff MRC Centre for Neuropsychiatric Genetics and Genomics- Dr Nabila Ali 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I discussed the findings from my work in the Born in Bradford cohort
Year(s) Of Engagement Activity 2024
 
Description Presentation to Cardiff University School of Medicine Exec Committee 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Presentation about the LINC multimorbidity programme to the Cardiff School of Medicine Executive Committee to increase awareness amongst academics.
Year(s) Of Engagement Activity 2022
 
Description Radio and television interest 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Media interest about autism risk in individuals with rare genetic disorders. The Cardiff new item was picked up by 29 news sites, and over 40 radio and TV stations including Fox, CBS and ABC news, 4 blogs and had a twitter reach of >60,000 people.
Year(s) Of Engagement Activity 2021
URL https://www.cardiff.ac.uk/news/view/2484687-clinical-criteria-for-diagnosing-autism-inadequate-for-p...
 
Description Rare Disease Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation about our research findings to provide an update on the development, cognition, mental health, physical health in patients with rare genetic conditions as well as on changes over time as they go from childhood to adolescence to adulthood.
Year(s) Of Engagement Activity 2025
 
Description School outreach - Dr Ruby Tsang was on the judging panel at the ESRC Festival of Social Science Cardiff event. 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact Part of the debate judging panel at the ESRC Festival of Social Science Cardiff event.
Year(s) Of Engagement Activity 2023
URL https://www.cardiff.ac.uk/news/view/2785104-what-do-young-people-think-will-make-the-uk-a-healthier-...
 
Description Social Media Linkedin / Twitter 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact LINC has written several tweets to increase webpage footfall. This includes: tweets linking to blog web pages, tweets regarding the Children of The North APPG reports and tweets to recruit new PPI members as well as tweets raising awareness of multimorbidity and the LINC project. We have monitored webpage engagement which has increased each time we post a new tweet.
Nov 6 - https://x.com/CNGGcardiff/status/1854173842597376200
Sep 13 - https://x.com/CNGGcardiff/status/1834520231953268845
Sep 12 - https://x.com/CNGGcardiff/status/1834186840779157573
Sep 6 - https://x.com/CNGGcardiff/status/1832000568761430460
Jul 15 - https://x.com/CNGGcardiff/status/1812822973633449999
Jun7 - https://x.com/CNGGcardiff/status/1812822973633449999
Mar 27 - https://x.com/CNGGcardiff/status/1775873260162339321
Feb 23 - https://x.com/CNGGcardiff/status/1761046991675547814
Feb 2 - https://x.com/CNGGcardiff/status/1775873260162339321
Dec 19 - https://x.com/CNGGcardiff/status/1737080020349129085
Year(s) Of Engagement Activity 2021,2022,2023,2024,2025
URL https://www.cardiff.ac.uk/lifespan-multimorbidity-research-collaborative
 
Description Social action for health engagement event- Dr Ioanna Katzourou 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact I prepared a poster and a short video about my research that was presented to PPIE members at the event with following discussion.
Year(s) Of Engagement Activity 2024
 
Description Southmead Health Information Day 22 October 2024 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Awareness raising about dementia research and diabetes research and opportunities to get involved, 22 October 2024
Year(s) Of Engagement Activity 2024
 
Description Talk at the Bordeaux-Bristol Public Health Symposium - Prof Nic Timpson 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Researchers from the University of Bordeaux and the University of Bristol attended this symposium to foster collaborations.
Year(s) Of Engagement Activity 2024
 
Description Wales Rare Disease Research Network (RDRN) launch meeting 
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 Network aiming to improve care and support for those affected by rare genetic conditions
Year(s) Of Engagement Activity 2025
 
Description Workshop to shape the the Bradford Age of Wonder research programme. 
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 Took part as invited expert in a workshop to discuss the design and foci of the newly Wellcome Trust funded 'Age of Wonder' research programme. This programme is linked to the LINC multimorbidity programme where the Born in Bradford cohort is one of the five LINC cohorts and LINC has close links with the Connect Bradford initiative.
Year(s) Of Engagement Activity 2022
 
Description online presentation to members of the Carers Support Centre 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Online meeting to raise awareness about health research on conditions that are more associated with ageing, and to build relationships to support Patient/Public Involvement (PPI) in future.
Year(s) Of Engagement Activity 2022
 
Description online presentation to members of the Carers Support Centre 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Online meeting to raise awareness about health research on conditions that are more associated with ageing, and to build relationships to support Patient/Public Involvement (PPI) in future.
Year(s) Of Engagement Activity 2022
 
Description visit to Llanishen Healthy Hearts group (British Heart Foundation) in September 2024 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact awareness raising about multimorbidity research, LINC project, and opportunities to join Patient/Public Involvement (PPI) panel
Year(s) Of Engagement Activity 2024