Intellectual Disability and Mental Health: Assessing Genomic Impact on Neurodevelopment (IMAGINE)

Lead Research Organisation: University College London
Department Name: Institute of Child Health

Abstract

In 2010, there were nearly 1.2 million people with intellectual disabilities (ID) in England, of whom 298,000 were children under 18 years of age. Although the cause of intellectual disability can be events such as extreme prematurity, birth injury or brain infections, genetic factors could account for 85%. Some genetic risk is inherited, but not all. Recent research has shown that, during the formation of the egg or sperm, minor chromosomal structural anomalies can occur. They are known as copy number variations (CNVs). The most serious CNVs are not present in either parent, but are 'newly occurring'. Fortunately, these are rare events, but if they occur in key regions of our genome they are strongly associated with ID. Nowadays, the cost of examining a patient's DNA for CNV is coming down dramatically. In the UK nowadays, nearly all children with ID presenting to paediatric services have the test. The National Health Service (NHS) pays, and reports are stored in the UK Regional Genetics Centres (RGC).

In about 14%, the test reveals a CNV that is probably the cause of ID. Up to 45,000 people each year will have these tests by 2015. Consequently, there is an enormous wealth of information about CNV held within UK RGC. Around the world, there is great interest in the genetic anomalies that cause ID (and related conditions such as autism or epilepsy). Knowing that a particular CNV may cause ID is valuable, but ID is commonly associated with severe behavioural and emotional problems too. We do not know how these relate to the genetic anomaly. In adult life, some individuals with ID go on to have more serious mental illness such as schizophrenia. We do not know why this illness develops in some people with ID but not in others. When a clinically significant CNV is found in a child with ID, families deserve to be told what the future holds for that child, and how they should best manage behavioural and educational issues to avert poor mental health outcomes. Our unique and novel programme of research aims to rectify that deficiency. Our main objective is to create a novel and comprehensive genetic knowledge base linked to detailed information about adjustment in childhood and adulthood, which we will compile from the two study phases. Our IMAGINE legacy database will be accessible to clinicians managing people with ID, not only in the UK but also around the world, and its establishment will benefit ID children and adults alike.

In the first phase, we will draw on the opportunity offered by the NHS-based resource of CNV reports. Because each clinically significant CNV is rare, we will have to collect a very large sample, from all UK RGC. We will focus on behavioural adjustment in early to middle childhood, and aim to recruit around 10,000 families. We will obtain parent reports about behaviour and abilities of this sample of children online, or by telephone, using well-tested measures of behavioural adjustment, social circumstances and medical history. We will follow-up families over 2 years to allow us to assess the stability of emotional/behavioural problems, to identify the importance of environmental risks, such as parental mental health, ethnicity or poverty.

In the second phase, we will focus on 4 relatively common CNV with a relatively high risk of poor mental health in adulthood. Our aim is to discover, by intensive investigation and personal assessment, additional risk and resilience influences. We will select children with the designated CNVs from the national study, study their abilities and their adjustment by home-based assessments, and follow them up over 2 years. We will also recruit adults with ID who possess the same 4 CNVs, to study long-term outcomes. They will also be visited and tested at home. In this way we aim to discover, for the first time, how the risk attaching to these important CNV manifests in childhood and adulthood, and potentially identify points for intervention to ameliorate that risk

Technical Summary

Our study will evaluate the impact of rare CNV on risk of mental health disorder in childhood and adulthood by utilizing data on individuals with ID tested by aCGH within NHS UK genetics services (~100,000 by 01/04/2014). From data mining we will identify clinically significant CNV and conduct internet-based population phenotyping (~10,000 by 31/12/2016). We will take advantage of existing NHS resources and validated, inexpensive and appropriate methodologies for on-line phenotyping [80% of UK families have internet access at home]. The study offers remarkable value for money. It will comprise two primary workstreams (WS1 & WS2), which will be closely interconnected and complementary. First, a national phenotypic 'extensive' survey of children with ID who possess CNV abnormalities reported as clinically significant from (aCGH), based on data mining from UK Regional Genetics Centres (RGC). WS1 will focus on behavioural adjustment in early to middle childhood. Nearly all assessments will be on-line, or by telephone, using standardized measures of behavioural adjustment, social circumstances and medical history. Recruitment will continue from study years 2014-2016. A baseline assessment, with follow-up at 6, 12, 18 and 24 months (2016-2018) will allow evaluation of stability of emotional/behavioural problems in relation to genotype and will measure interacting factors linked to environmental risk. WS2 will conduct 'intensive' phenotyping of individuals with CNV-associated ID, focusing on 4 genetic anomalies previously reported to be associated with high risk of adverse mental health outcome and poor adaptive functioning [deletions at 1q21.1, 15q11.2, 15q13.3, 16p11.2]. Children with the selected CNVs will be sourced from the national phenotypic study and followed up, initially over 24 months. Adults with ID carrying the same CNVs, sourced from UK NHS RGC, will be recruited to study long-term outcomes. Dedicated research teams will test participants in their homes.

Planned Impact

Our study will impact short-term upon the domains of clinical practice and quality of life for affected families. Potential economic benefits include more efficient targeting of resources and reduced familial disruption. Longer-term, knowledge arising from genetic discoveries could support partnership with industry through targeted drug development. We will work closely with stakeholders throughout this programme, including the charity UNIQUE which will be represented on Scientific Advisory Board.

Clinicians
Clinicians increasingly request specialist genetic investigations for children with intellectual disability [ID] (35,000 tests p.a.). Usually, the results do not translate into specific recommendations for management or prognostic statements. By linking, for the first time, genotypic data on specified CNV with standardized phenotypic data, our study will generate clinically valuable information. Unusual behaviour patterns or emotional disorders are all too readily ascribed to inappropriate parenting practices, often by parents themselves. Recognizing common disorder-specific patterns is the first step to reassuring parents, and teaching clinicians/social support staff. Impact will reduce self-blaming and stress, with resultant improved quality of life for affected families. Impact timescale < 5years.

Children and Families affected by ID
Our follow-up studies will measure interaction cascades between genotypic/phenotypic characteristics of ID children and their influence upon family life, friendships, learning and leisure activities. Impact of child behaviour can be reliably and easily measured across time, and may independently predict future symptoms and psychiatric disorders. Potential value includes an opportunity to measure the interactive process by which disturbed emotions and behaviour can undermine family/individual quality of life. The approach should reveal new opportunities for intervention. Effective intervention can enhance parents' economic activity (e.g. by promoting their mental health, reducing school exclusions, limiting risk of parental separation). Impact timescale <5 years.

Education and Care Professionals
Intellectual disability implies global impairments in cognitive skills. Yet some developmental trajectories may be preserved (exemplified by the relatively good language skills of children with Williams syndrome). Parsing the wide range of ID by CNV subtyping, may allow the identification of rare variant disorders in which islets of ability are common. Gaining such knowledge about specific CNV has implications for education planning, and fostering the maximization of individual potential. Such discoveries could inform policy on the management of children with CNV-related ID, including support required to mainstream, or provision of speech and language services. Information on environmental factors influencing emergence of challenging behaviour linked to genotypic risk could point to genotype-specific interventions, reducing risk of transfer to residential care and the associated costs. Impact timescale <5 years.

Clinical Pharmacology
Developmental pathways in ID overlap with autism, schizophrenia, and epilepsy. We lack a lifespan perspective on risk related to genotype. Our accelerated longitudinal cohort study, linking genotype (with, in due course, supplementary genome-sequencing) to phenotype could facilitate pathway and network analysis of complex 'omics data in high-risk populations. There are potential synergies that could lead, in longer term, to academic-pharmaceutical industry partnerships leading to the discovery of causal mechanisms and potential novel drug targets for intervention. Impact timescale <10 years.

Training of skilled researchers
Within the framework of the program we will be fostering the academic skills of the three junior Co-I (Mandy, St Pourcain, Baker), all of whom are on a career track to senior positions. Impact timescale <5 years.
 
Description Autism Clinical Gene (Locus) List Workshop, Toronto
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description GENIDA Scientific Advisory Board (Prof Raymond)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description International Working Party - Guidelines for Development of Paediatric Glucocorticoid Toxicity Index
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Rare Disease Advisory Board - NHS England (Prof Raymond)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Rare Disease Working Transition Group chaired by Prof Sue Hill Chief Scientific Officer for NHSE (Prof Raymond).
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Scientific Advisory Board for European Society of Human Genetics (Prof Raymond)
Geographic Reach Europe 
Policy Influence Type Participation in a advisory committee
 
Description Scientific Advisory Board for French Government Genotyping Project (Prof Raymond)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Dissecting the effects of genomic variants on neurobehavioral dimensions in CNVs enriched for neuropsychiatric disorders
Amount $12,000,000 (USD)
Organisation National Institute of Mental Health 
Sector Hospitals
Country Sri Lanka
Start 04/2019 
End 03/2024
 
Description Future Minds Programme
Amount £650,000 (GBP)
Organisation The Waterloo Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2018 
End 09/2024
 
Description Improving mental health for children with neurodevelopmental disabilities: A Knowledge Transfer Partnership between Cerebra and Cardiff University
Amount £216,320 (GBP)
Funding ID 511379 
Organisation Innovate UK 
Sector Public
Country United Kingdom
Start 07/2018 
End 06/2021
 
Description Integrating genetic, clinical and phenotypic data to advance stratification, prediction and treatment in mental health.
Amount £971,676 (GBP)
Funding ID MC_PC_17212 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 03/2018 
End 03/2020
 
Description Pilot study to develop and instrument to capture broad-ranging neurodevelopmental problems in children with a genetic diagnosis of intellectual disability.
Amount £48,502 (GBP)
Organisation Baily Thomas Charitable Fund 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2019 
End 10/2020
 
Description Programme Grant
Amount £2,548,515 (GBP)
Funding ID 169202 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 04/2016 
End 09/2019
 
Description Targeting ERK signalling to ameliorate intellectual disability and autism spectrum disorder associated with chromosomal rearrangements at 16p11.2
Amount £1,181,767 (GBP)
Funding ID MR/S037667/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 06/2019 
End 05/2023
 
Description To establish a scalable set of assay platforms against which the phenotype consequences of manipulating the identified exclusive targets can be screened and effects the drug compounds assessed to develop therapeutics for schizophrenia.
Amount £2,960,749 (GBP)
Organisation Takeda Pharmaceutical Company 
Sector Private
Country Japan
Start 10/2018 
End 09/2022
 
Title IMAGINE ID Database 
Description A main objective of the IMAGINE-ID study was to create a database which contained all phenotypic and genotypic information associated with children recruited into the study, which would be a resource for others researching rare genetic diseases associated with intellectual disability. The backend of this database has now been constructed in collaboration with the Farr Institute of Health Informatics at UCL. There are 4480 variables in the database, and a data dictionary has been compiled. We recognise that there will be a substantial piece of work to construct the front-end of the database, and this is planned to be completed in the next year. 
Type Of Material Database/Collection of data 
Year Produced 2017 
Provided To Others? No  
Impact Use in current ongoing analysis within the IMAGINE ID study - the database has facilitated identification of cohort subsets and analysis using multiple sources of data. 
 
Description 16p11.2 European Consortium and Simons VIP 
Organisation Simons Foundation
Country United States 
Sector Charity/Non Profit 
PI Contribution Shared research data, allowing for an international study on mental health in 16p11.2 Deletion and Duplication Syndromes
Collaborator Contribution Shared research data, allowing for an international study on mental health in 16p11.2 Deletion and Duplication Syndromes
Impact Published paper: Niarchou M, Chawner SJRA, Doherty JL, Maillard AM, Jacquemont S, Chung WK..... Bree MBMVD, (2019). Psychiatric disorders in children with 16p11.2 deletion and duplication.. Translational psychiatry, 9 (1), pp. 8
Start Year 2012
 
Description Bristol University; Professor Matt Jones and Dr Ullrich Bartsch 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaborated on a project investigating the neuropsychological basis of sleep disturbances in 22q11.2 Deletion Syndrome
Collaborator Contribution Collaborated on a project investigating the neuropsychological basis of sleep disturbances in 22q11.2 Deletion Syndrome
Impact Manuscript submitted
Start Year 2015
 
Description FARR Institute for Health Informatics Legacy Database 
Organisation Farr Institute of Health Informatics Research
Country United Kingdom 
Sector Academic/University 
PI Contribution See below
Collaborator Contribution The FARR Institute will help the IMAGINE ID team with: -Building a legacy database for all IMAGINE ID data -Managing, storing and curating data -Metadata standards and data documentation -Data preservation strategy and standards -Formal information/data security standards
Impact Not as of yet.
Start Year 2016
 
Description KU Leuven and Maastricht Universities 
Organisation Maastricht University (UM)
Country Netherlands 
Sector Academic/University 
PI Contribution Shared research data for a European wide study on cognition in 22q11.2 Deletion Syndrome
Collaborator Contribution Shared research data for a European wide study on cognition in 22q11.2 Deletion Syndrome
Impact Manuscript submitted
Start Year 2015
 
Description KU Leuven and Maastricht Universities 
Organisation University of Leuven
Country Belgium 
Sector Academic/University 
PI Contribution Shared research data for a European wide study on cognition in 22q11.2 Deletion Syndrome
Collaborator Contribution Shared research data for a European wide study on cognition in 22q11.2 Deletion Syndrome
Impact Manuscript submitted
Start Year 2015
 
Description MINDDS - a pan-European network for Neurodevelopmental Disorder research 
Organisation Cardiff University
Country United Kingdom 
Sector Academic/University 
PI Contribution Currently have 17 countries in the Action, and Sweden, Finland, Italy and Greece in the process of joining. This will give us a total of 21 countries at our beginning that span the whole of the geographical European area. We also have Canada as an International Partner. Other countries may join as the Action proceeds. The Action has been allocated a budget of €58,500 for the period of Dec 1st 2017 -April 30th 2018 This is a COST action grant (to Cardiff University) under the European Cooperation in Science and Technology umbrella.
Collaborator Contribution To achieve this, we have created MINDDS (Maximising Research Impact in Neurodevelopmental Disorders), a research network focused on identifying and studying patients with rare NDD conditions to enhance understanding and treatment in this field. The project is supported as a European COST Action. COST (European Cooperation in Science and Technology) is Europe's longest-running framework to support trans-national research cooperation and is supported by the EU Framework Programme for Research and Innovation Horizon 2020. MINDDS will create a pan-European network of clinical scientists, preclinical researchers from both public and industrial centres and patient representatives to advance studies of NDD patients for these pathogenic CNV. The project aims to substantially accelerate research progress for NDD by three interlinked objectives. First, the initiative will create an international network for building larger patient cohorts, who are willing to participate in research. To do this, it will agree a gold standard clinical patient assessment to ensure that all key relevant data is collected in the same way and that patients can easily be compared from different national sites. Furthermore, MINDDS will establish a regulatory, legal and ethical framework for effective trans-national NDD patient research cooperation and information exchange. Second, to ensure maximum value is realised from patient-based research, MINDDS will develop standardised protocols and methods so that the same research methods are made regardless of which research centre is used. This standardisation of protocols will include whole patient studies, such as cognitive testing and brain imaging, but also new and emerging technologies of patient-derived stem cells. A knowledge nexus Lastly, MINDDS will develop an overarching online resource for sharing information - a knowledge nexus. This will include a European registry for NDD patients, who may participate in future research; a research database for active researchers and an information service for clinicians, patients, care providers and parents. For its members, MINDDS aims to bring together a community via conferences, workshops and working groups. It will train clinicians to identify and assess NDD patients with CNV, who are often children, and offer a way for them to work together to build the research cohorts. We aim to promote understanding of NDD within the research community, creating close working partnerships between research centres, both public and industrial, and the clinical frontline and patient communities. This will be done online via the knowledge nexus, but also via support for scientific exchange visits for young researchers, clinicians and patient representatives.
Impact The MINDDS study is being led by the team in Cardiff - I am one of the two UK representatives on the MINDDS committee. There have been two preliminary meetings to date, one in Brussels and the other in Belgrade.
Start Year 2017
 
Description Maxappeal 
Organisation Max Appeal
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Collaboration on research recruitment, carrying out research and disseminating research findings.
Collaborator Contribution Collaboration on research recruitment and disseminating research findings.
Impact Feature on 22q11.2 Research on the national TV show BBC Breakfast (Engagement activities)
Start Year 2010
 
Description Unique - Rare Chromosome Disorders Charity 
Organisation Unique - The Rare Chromosome Disorder Support Group
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution IMAGINE ID has worked with Unique stakeholders to develop better resources for families with rare diseases and increase our understanding of these rare conditions.
Collaborator Contribution Unique stakeholders have advised the IMAGINE ID research team on its protocols through focus groups.
Impact Outcomes: -Revised IMAGINE ID protocols -New information booklet -New consent forms
Start Year 2014
 
Description 16p11.2 Family Day, 
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 16p11.2 Family Day,
October 2016
Cardiff University
IMAGINE ID hosted another successful family day for people affected by 16p11.2 deletions and duplications, with over 150 families attending (including families that had already joined the project and families that were interested and subsequently invited to join). The event was a wonderful opportunity for the IMAGINE ID team, including Prof Skuse and Prof van den Bree, to present current research in the area. We also welcomed representatives from Unique and Simons VIP Connect who presented more about their organisations and information on the support they provide. We hope to run a follow-up day again in the future.
Year(s) Of Engagement Activity 2016
 
Description 22q Ireland European Alliance Meeting 
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 Several members of the Cardiff University team presented at a European meeting for patients and families affected by 22q11.2 Deletion Syndrome.
Year(s) Of Engagement Activity 2017
 
Description 22q11.2 Deletion Syndrome Documentary 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact 22q11.2 Deletion Syndrome Documentary

In collaboration with Nottingham Trent University Centre for Broadcasting and Journalism
A student from the Centre for Broadcasting and Journalism is creating a documentary to inform individuals about 22q11.2 Deletion Syndrome and to raise awareness of the syndrome. The IMAGINE-ID team at Cardiff have been asked to provide academic input to be filmed as part of the documentary.
Year(s) Of Engagement Activity 2017
 
Description ASSERT newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Full page advertisement and editorial to raise profile of study and reach out to a wider audience to assist with recruitment particularly related to Angelman's syndrome patients and families
Year(s) Of Engagement Activity 2018
URL https://www.angelmanuk.org/
 
Description Angelman Syndrome Conference 
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 Liverpool, 2nd-3rd October 2015 - 2 team members presented initial IMAGINE ID study findings to families from across the UK and USA.

2018 - Exhibition stand at family conference for individuals with Angelman syndrome to promote awareness and research to eligible families.
Year(s) Of Engagement Activity 2014,2015,2018
URL https://www.angelmanuk.org/events-and-conferences-for-angelman-syndrome-assert/
 
Description Autism Eye Magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Half-page advertisement plus email editorial to raise profile of study and reach out to a wider audience to assist with recruitment to study particularly related to autism
Year(s) Of Engagement Activity 2018
URL https://www.autismeye.com/
 
Description BRAINFest 
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 IMAGINE ID team exhibited at the interactive showcase event of the Cambridge Neuroscience Festival of Brain Science, which was designed to bring together neuroscientists from across Cambridge University. This also included a VIP invite-only evening reception, where we engaged with high-profile and influential attendees.
Year(s) Of Engagement Activity 2017
 
Description Cambridge Rare Disease Network Annual Conference 
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 Cambridge Rare Disease Network Annual Conference,
October 2016
London
Professor Raymond presented work about IMAGINE ID during the Innovations in Health session to approx. 200 guests attending including patient advocates, academics, researchers, industry professionals and policy-makers. From this, we have collaborated closely with the Cambridge Rare Disease Network including writing a piece for their upcoming newsletter and making connections with the organisation Special Needs Jungle who help families navigate the SEND paperwork (Special Educational Needs and Disability).
Year(s) Of Engagement Activity 2016
 
Description Cambridge Rare Disease Network Summit 
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 Exhibited at the annual CRDN conference meeting in Cambridge, joining other members of the rare disease community, including patients, charity/support group representatives and researchers.
Year(s) Of Engagement Activity 2017
 
Description Cambridge Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact 2017 - Professor Raymond presented an evening talk entitled 'Parents as partners in research', in which she discussed the innovative method in which we are collecting data from parents and utilising their expertise in their children's behaviours by means of online assessments. The evening also included a reading of the children's book AVERY.
In addition, we had an exhibition stand at the "hands-on" weekend event; an interactive session wherein we showcased the latest assessments available in the project and engaged with patients and families.

2018 - Exhibition stand at international Cambridge Science festival to promote research to the public, as well as practitioners and potential eligible study participants and families
Year(s) Of Engagement Activity 2017,2018
URL https://www.sciencefestival.cam.ac.uk/about/past-festivals/2018-festival
 
Description Cardiff MRC Festival 
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 Festival at DEPOT food & entertainment venue, different fairground style engagement activities to open up coversations regarding mental health and genetics. Aimed to engage the public away from the constraints of a university setting.
Year(s) Of Engagement Activity 2018
URL https://www.cardiff.ac.uk/news/view/1222479-all-the-fun-of-the-fair-at-cardiffs-mrc-festival
 
Description Cardiff Rare Disease Showcase 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Dr Samuel Chawner presented a 5 minute 'lightning talk' at the event hosted by Find A Cure charity to other researchers, industry and patient groups in Cardiff Bay.
Year(s) Of Engagement Activity 2017
 
Description Cardiff Rare Diseases Patient Networking Day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact The Cardiff University team had an exhibition stand open to the public at the event. The event held talks from expert speakers discussing the latest advances in the field of rare diseases and also had patients talking about their experiences and perspectives on living with these conditions.
Year(s) Of Engagement Activity 2017
 
Description Chromosome 18 Registry and Research Society Europe 
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 Chromosome 18 Registry and Research Society Europe
August 2016,
Rome
Members of the IMAGINE ID team travelled to the Chromosome 18 Registry and Research Society Europe Annual weekend family conference. Approximately 100 families attended the event and it was a fantastic opportunity to meet, interact and disseminate our work with families from around the world affected by genetic changes in Chromosome 18, as well as recruiting some of them to join the study
Year(s) Of Engagement Activity 2016
 
Description ESRC Social Science Festival 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact ESRC Social Science Festival

Cardiff University's MRC Centre for Neuropsychiatric Genetics and Genomics held an event on mental health for sixth form students form the local community as part of the ESRC social science festival. Dr Samuel Chawner spoke about his research and the work of IMAGINE-ID to students. There was a great interest from sixth form students about the extent that genetics impacts child development.
Year(s) Of Engagement Activity 2016
URL http://www.esrc.ac.uk/files/public-engagement/festival-of-social-science/festival-programme-2016/
 
Description Enable Magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Quarter-page advertisement in printed magazine and electronic version. Raise profile of study and reach out to a wider audience to assist with recruitment to study
Year(s) Of Engagement Activity 2018
URL http://enablemagazine.co.uk/
 
Description FIND magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Our involvement with FIND magazine - a Special Educational Needs and Disability (SEND) newsletter covering the Lancashire region - arose after a mother of a participant contacted us because she wanted to publish an article describing her experience of taking part in the study with her son. This will feature in the Spring Edition of the magazine, along with an advert for the project.
Year(s) Of Engagement Activity 2018
 
Description Feature on 22q11.2 Research on BBC Wales Radio Breakfast show 
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 Public/other audiences
Results and Impact Radio interview on 22q11.2 Deletion Syndrome
Year(s) Of Engagement Activity 2018
 
Description Feature on 22q11.2 Research on the national TV show BBC Breakfast 
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 Public/other audiences
Results and Impact BBC filming at Cardiff University focusing on 22q11.2 Deletion Syndrome research
Year(s) Of Engagement Activity 2018
 
Description Findacure Rare Disease Showcase 
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 Members of the team presented a lightning talk at the Cardiff and Cambridge events to highlight the study to attendees from local pharma, patient support groups and research groups. At the Newcastle event IMAGINE ID had an exhibition stand to provide information to local researchers and clinical staff.
Year(s) Of Engagement Activity 2017
 
Description Genetic Disorders UK Leadership Symposium Meeting, London 
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 Exhibition stand at international event to promote research to managers and CEOs of international patient support groups and charities
Year(s) Of Engagement Activity 2018
URL https://www.geneticdisordersuk.org/leadershipsymposium/2018leadershipsymposium
 
Description Genetics Research Matters: Training and Development Event, London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact National training event hosted by the UK Clinical research network to educate and promote national research to practitioners across the UK.
Year(s) Of Engagement Activity 2018
URL http://www.clingensoc.org/news-events/events/genetics-research-matters-training-and-development-even...
 
Description IMAGINE ID newsletters 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Our annual patient Christmas newsletter was sent to over 1,540 families in December 2017. In this year's newsletter, we put in a request to families to ask if they could help us. If they felt IMAGINE had been a worthwhile study to be a part of and if they knew of other families who would benefit from the study, we asked if they could recommend us, invite a friend or share amongst any patient groups or charities they may be involved with. This was met with plenty of enthusiasm from families, offering to pass on information and promote us in various avenues.

We also sent out a mailshot to all families in September 2017, asking for feedback on the project as we wanted to share this with the RGC's to show how families are benefiting from the IMAGINE ID study. We asked if the study had been worthwhile, if they found the personalised report useful and what their overall experience of working with the IMAGINE ID team had been. We received lots of feedback, with many families commenting on how beneficial they found the report and the extent to which they had shared it.

We will continue to keep regular contact with the recruited families to keep them informed about the latest findings in the project and provide opportunities to maintain their engagement.
Year(s) Of Engagement Activity 2017
 
Description IMAGINE ID research update, Cambridge 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Update of research study to Cambridge regional genetics centre including latest findings, recruitment figures and how to increase numbers of participants from their centre
Year(s) Of Engagement Activity 2018
 
Description IMAGINE ID research update, Leeds 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Update of research study to Leeds regional genetics centre including latest findings, recruitment figures and how to increase numbers of participants from their centre
Year(s) Of Engagement Activity 2018
 
Description IMAGINE ID research update, North West Thames 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Update of research study to North West Thames regional genetics centre including latest findings, recruitment figures and how to increase numbers of participants from their centre
Year(s) Of Engagement Activity 2019
 
Description IMAGINE ID research update, Sheffield 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Update of research study to Sheffield regional genetics centre including latest findings, recruitment figures and how to increase numbers of participants from their centre
Year(s) Of Engagement Activity 2018
 
Description IMAGINE ID research update, Southampton 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Update of research study to Southampton regional genetics centre including latest findings, recruitment figures and how to increase numbers of participants from their centre
Year(s) Of Engagement Activity 2018
 
Description IMAGINE ID research update, St George's 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Update of research study to St George's regional genetics centre including latest findings, recruitment figures and how to increase numbers of participants from their centre
Year(s) Of Engagement Activity 2018
 
Description International Congress 2016 - Royal College of Psychiatrists 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Samuel Chawner and Dr Andrew Cuthbert presented about the research work of IMAGINE-ID at the Royal College of Psychiatrists International Congress. The presentations formed part of a symposium session on copy number variants and psychiatry led by the Cardiff team. It was a great opportunity to inform psychiatrists about the work of IMAGINE-ID and to discuss clinical issues that face patients with rare genetic variants and neuropsychiatric disorder.
Year(s) Of Engagement Activity 2016
URL http://www.rcpsych.ac.uk/pdf/Full%20Program%20v50.pdf
 
Description Interview with National Institute for Health Research (NIHR) for Rare Disease Day 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Article describing research into 22q11.2 Deletion and Duplication Syndromes
Year(s) Of Engagement Activity 2018
 
Description Kidz to Adultz Exhibition, Bristol 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Exhibition stand at international event to promote research to the public, families, patients, managers and CEOs of international patient support groups and charities
Year(s) Of Engagement Activity 2018
URL https://www.kidzexhibitions.co.uk/kidz-wales/
 
Description Kidz to Adultz Exhibition, Coventry 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Exhibition stand at international event to promote research to the public, families, patients, managers and CEOs of international patient support groups and charities
Year(s) Of Engagement Activity 2018
URL https://www.kidzexhibitions.co.uk/kidz-middle/
 
Description Kidz to Adultz Exhibition, Farnborough 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Exhibition stand at international event to promote research to the public, families, patients, managers and CEOs of international patient support groups and charities
Year(s) Of Engagement Activity 2018
URL https://www.kidzexhibitions.co.uk/kidz-south/
 
Description Kidz to Adultz Magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Magazine article Editorial from FIND magazine to raise profile of study and reach out to a wider audience to assist with recruitment to study particularly related to IMAGINE ID experience from a family perspective.
Year(s) Of Engagement Activity 2018
URL https://www.lancashire.gov.uk/children-education-families/special-educational-needs-and-disabilities...
 
Description Kidz to Adultz up North 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact A new venture for the team this year was attending one of the Kidz to Adultz Exhibitions, hosted by Disabled Living. These events are totally dedicated to children and young adults up to 25 years with disabilities and additional needs. We had an exhibition stand, providing information and spoke with many parents and carers, as well as professionals who support and work with them.

Exhibition stand at international event to promote research to the public, families, patients, managers and CEOs of international patient support groups and charities
Year(s) Of Engagement Activity 2017,2018
URL https://www.kidzexhibitions.co.uk/kidz-north/
 
Description Kleefstra Syndrome Conference, Coventry, 14th-16th August 2015 
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 2 team members presented the preliminary results of the IMAGINE ID Study to Kleesftra families from the UK, Netherlands, France & USA.
Year(s) Of Engagement Activity 2015
 
Description Leicester Local Offer Live 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Exhibition stand at regional event to promote rare disease awareness and research to the public, families, patients, managers and CEOs of patient support groups and charities
Year(s) Of Engagement Activity 2018
URL https://www.leicestershire.gov.uk/education-and-children/special-educational-needs-and-disability
 
Description Library of Imagined Genes 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The Cardiff University team was involved in the second instalment of this interactive performance and installation helping the public understand the relationship between genetics, behaviour and emotions. The team also helped with the first instalment back in 2016 which took place in Green Man Festival.
Year(s) Of Engagement Activity 2016,2017
 
Description Living with a Rare Disease - British Paediatric Surveillance Unit 
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 IMAGINE ID exhibited at an informal networking event, focusing on rare childhood diseases and disorders, that brought together patients and carers, healthcare professionals, researchers and policy-makers.
Year(s) Of Engagement Activity 2017
 
Description MINDDS ("Maximising Impact of research in NeuroDevelopmental DisorderS) meeting 
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 Presentation of IMAGINE-ID findings to clinicians and researchers from across Europe.
2018 - Belgrade, https://mindds.eu/activities/meetings/belgrade/
2019 - Leuven, https://mindds.eu/activities/meetings/leuven/
Year(s) Of Engagement Activity 2018,2019
URL https://mindds.eu/activities/meetings/belgrade/
 
Description MQ Mental Health Science Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Samuel Chawner presented on 'Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment' at the MQ Mental Health Science Meeting in London, Feburary 2018.
Year(s) Of Engagement Activity 2018
 
Description MRC's Millennium Medal Science Showcase 
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 Professor Jeremy Hall attended the event and showcased the IMAGINE ID study as a "lifelong mental health" exhibitor. This entailed raising awareness of the study to parliamentarians and policymakers.
Year(s) Of Engagement Activity 2018
 
Description NHS Clinical Genetics Study Day 
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 Exhibited IMAGINE ID study material at the Cambridge University Hospital Clinical Genetics Study day, attended by healthcare professionals and researchers.
Year(s) Of Engagement Activity 2018
 
Description NIHR Clinical Research Network East Midlands and West Midlands Inaugural Genetics Speciality Day, Lichfield 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation to research practitioners and early career researchers to publicize successes and challenges of the study and share good practices about involving the UK CRN in study processes.
Year(s) Of Engagement Activity 2018
URL https://www.eventbrite.co.uk/e/inaugural-genetics-specialty-event-registration-51541572230#
 
Description Phenotyping training school, Skopje Macedonia 
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 Training school on CNV research and presentation of IMAGINE ID findings to clinicians and researchers from across Europe
Year(s) Of Engagement Activity 2018
URL https://mindds.eu/activities/training-schools/skopje/
 
Description Pint of Science, Cambridge 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact Description of IMAGINE ID study and promoting awareness of research to local scientists
Year(s) Of Engagement Activity 2018
 
Description Pint of Science, Cardiff 
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 Cardiff University team was involved in the organisation of the first ever Pint of Science festival in Cardiff which brought researchers to a local institution within the city to talk and engage with the public about science and the current research currently being undertaken in the University.
Year(s) Of Engagement Activity 2017
 
Description Pos'ability Magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Pos'ability Magazine, an innovative disability lifestyle magazine, featured an online editorial on IMAGINE ID, as well as an advert for the project and a promotional piece about our children's book Avery.
Year(s) Of Engagement Activity 2018
 
Description Presentation to Medical Genetics Clinicians at the Centre for Genomic Medicine Manchester 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation to clinical staff about IMAGINE ID findings
Year(s) Of Engagement Activity 2018
 
Description Public voices shaping health research 
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 IMAGINE ID exhibited in the pop-up village at this public involvement forum, focusing on the importance of patients, carers and the public in the future of health research.
Year(s) Of Engagement Activity 2017
 
Description Rare Revolution Magazine article 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Rare Revolution magazine included a feature article about the project, written by Prof Lucy Raymond as part of their Winter 2017 "Rare Minds" issue. This followed on from a shorter promotional piece in the Summer 2017 edition of the magazine.
Year(s) Of Engagement Activity 2017
 
Description RareFEST, Cambridge 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Exhibition stand at international event to promote rare disease awareness and research to the public, families, patients, managers and CEOs of international patient support groups and charities
Year(s) Of Engagement Activity 2018
URL https://camraredisease.org/rarefest/
 
Description Recruitment Knowledge Exchange Workshop 
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 Recruitment Knowledge Exchange Workshop
September 2016
London
IMAGINE ID hosted this successful workshop intended for staff working at RGCs to inform them of the latest developments within the project and encourage recruitment practice sharing amongst coordinators. Over 20 staff members attended from 13 different RGCs, with all 22 RGCs receiving the relevant materials afterwards. The workshop was highly evaluated and we hope to run a follow-up workshop late in 2017.
Year(s) Of Engagement Activity 2016
 
Description SEN Magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Half-page advertisement plus 100 word Avery review in What's New section of May/June 2018 issue. Raise profile of study and reach out to a wider audience to assist with recruitment to study by including advertisement in two issues with relevant articles to the study e.g. autism.
Year(s) Of Engagement Activity 2018
URL https://senmagazine.co.uk/
 
Description SSBP International Research Symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Marie Erwood presented on 'Intellectual disability and copy number variants: mental health in the IMAGINE ID cohort.' at the Society for the Study of Behavioural Phenotypes Conference in Leiden, Netherlands, in September 2017. This conference attracted an international audience of practitioners in developmental and behavioural disorders and gave an opportunity to present our research and explore collaborations.
Year(s) Of Engagement Activity 2017
 
Description Scottish Genetics Education Network 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Scottish Genetics Education Network
December 2016
Ninewells Hospital
Dundee
Members of the IMAGINE ID team presented at the Scottish Genetics Education Network annual conference to approximately 80 delegates about the study's research processes and preliminary findings to encourage recruitment from the four RGCs in Scotland (Aberdeen, Dundee, Edinburgh & Glasgow) that had just opened.
Year(s) Of Engagement Activity 2016
 
Description Seattle Club Conference on research in intellectual and developmental disabilities, Shrewsbury 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Conference for international researchers to present research in intellectual and developmental disabilities - poster presentation about IMAGINE ID.
Year(s) Of Engagement Activity 2018
URL http://www.seattleclubconference.org/
 
Description Smith-Magenis Syndrome Conference, Solihull, 2nd May 2015 
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 2 team members presented preliminary results of the IMAGINE ID Study to families with Smith Magenis Syndrome from France, Netherlands, Denmark, Italy & USA.
Year(s) Of Engagement Activity 2015
 
Description Surrey NHS Developmental Paediatrician Study Day 
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 Following communication with some community paediatricians eager to recruit to IMAGINE ID, we were invited to attend the Surrey NHS Developmental Paediatrician Study Day. Here we presented the project and engaged in valuable discussion with the local community paediatricians.
Year(s) Of Engagement Activity 2017
 
Description The World Congress of Psychiatric Genetics in Orlando 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Samuel Chawner showcased the work of IMAGINE-ID at an international conference to showcase the IMAGINE-ID study. He was awarded early career presentation finalist and a Guarantors of Brain travel grant.
Year(s) Of Engagement Activity 2017
 
Description Transdiagnostic conference presentation, Cambridge University 
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 researchers and clinical psychologists on IMAGINE ID findings
Year(s) Of Engagement Activity 2018
URL http://www.mrc-cbu.cam.ac.uk/blog/2018/03/2018-conference-on-transdiagnostic-approaches-to-mental-he...
 
Description UCL Populations & Lifelong Health domain Symposium 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Poster presentation about the IMAGINE ID project to institutional colleagues. No known impacts
Year(s) Of Engagement Activity 2018
 
Description UNIQUE family day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Unique family day
June 2016,
Glasgow
Members of the IMAGINE ID team travelled to Glasgow for UNIQUE's annual participant conference. We engaged with families affected by rare genetic conditions and provided information packs and leaflets to interested families. We had a positive response and many families signed up to the study on the day.
Year(s) Of Engagement Activity 2016
 
Description Unique conference (Bristol) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact 5 people from our team participated in the conference organised by the charity Unique. 60 families who are members of Unique attended the conference. At the start of the conference, our team introduced the IMAGINE ID project to everyone present. We had a stand with a poster and flyers, and we interacted with families interested in the study throughout the day.

Our participation in the Unique conference strengthened our collaboration with the charity. Throughout the day, families expressed enthusiasm for the IMAGINE ID project and the online assessment. 26 families signed up to receive further information about the project and registered their interest in taking part in one or more aspects of the study.
Year(s) Of Engagement Activity 2014