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Background and Research Plan听

IMAGINE ID stands for: Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment. The programme of research encompasses IMAGINE-1 (2015-2020) and IMAGINE-2 (2020-2024).

In England, there are over a million people with learning disabilities, a quarter of whom are children of school age. Most moderate to severe intellectual disability (ID) has a genetic cause. In order to identify those genetic risks, the NHS is now routinely screening the DNA of children who have significant developmental delays. Being informed that their child's ID is caused by a genetic change is potentially of value to parents but, at present, that information is rarely used to advise them about the risk of behavioural or educational issues, or to advise on optimal management to avert difficulties arising in the future. Our study aims to fill that gap in knowledge.

IMAGINE ID was conceived and developed with advice and discussion from the UK organisation . IMAGINE-1 was awarded funding in 2014 by the Medical Research Council and the Medical Research Foundation. IMAGINE-2 was awarded funding in 2020 by the Medical Research Council to enable a follow-up study of the families recruited during IMAGINE-1.听

Our Aims

IMAGINE ID wants to answer a question parents often ask when their child has a rare genetic condition: 鈥淪o what does this mean for my child?鈥�
In the first phase of IMAGINE ID - IMAGINE 1 - we successfully enrolled over 3,400 individuals and are incredibly grateful to all the families that have taken part.听
IMAGINE 2 will continue to help answer this important question by following up families who took part in IMAGINE 1. The purpose of IMAGINE 2 study is to find out how the children who took part in the study have changed as they鈥檝e grown up.听
This will help us to:听
鈥⑻�听 听Analyse how genetic changes affect children and young people鈥檚 behaviour
鈥⑻�听 听Inform the care of families and children now, and in the future听

Research Team

The IMAGINE-2 team is led by clinicians from University College, London and Cardiff University. We are a multidisciplinary team of specialists in Psychiatry and Psychology who care for families of children with intellectual disability. All of us have a research interest in the area of human genetics, intellectual disability and behavioural phenotypes.

Principal Investigators听
Professor David Skuse听
Professor Marianne van der Bree听
Professor Sir Michael Owen
Professor Jeremy Hall

Co-Investigator
Dr Samuel Chawner听

Research Fellow听
Dr Jeanne Wolstencroft听

Research Assistant
Harriet Housby听

Data Manager
Irene Lee

Contact us: ich.imagineid@ucl.ac.uk听
Website:

Data Collection

IMAGINE 1 (IMAGINE ID)

Families completed online questionnaires through a secure internet connection. These asked about their child鈥檚 behaviour, development and medical history. We also asked parents and/or carers about their own health. Many children completed a fun draw-a-person task, making images of themselves and their family members.
Some families were invited to a face-to-face interview with the Cardiff team. This involved additional games, puzzles and tasks and took about 4-5 hours.听
Families received a personalised summary report of their child鈥檚 strengths and difficulties in terms of behavioural and emotional adjustment. We know they found these reports useful in getting support from a variety of services, including schools and mental health specialists.
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IMAGINE 2听

We are in the process of contacting families who took part in IMAGINE 1 to invite them to take part in our follow up study IMAGINE 2. We will ask them to complete a series of questionnaires once a year for the next 5 years about their child鈥檚 health, wellbeing, behaviour, learning difficulties, educational support. Families who took part in the 听face-to-face interview, will be invited to do so again.

With appropriate permission, we will also access children鈥檚 NHS medical records held by NHS Digital and National Pupil Database records held by the Department for Education (DfE). This will help us learn about the physical health needs and educational achievements of children with a rare genetic disorder, without asking families to complete additional questionnaires.听

Our protocols

Find out more information about the study procedures here:听

Our Outputs

to听view the publications from our research

Public Engagement听

Avery听

Back in 2019 we published a new children's book, Avery. The book was written to help start conversations between children, families and doctors about rare disease and research. , one of the Principal Investigators of IMAGINE ID, collaborated with illustrators, and Pam Smy from Anglia Ruskin University, with the aim of honouring the children and families that have inspired our research.

Avery was published and printed in collaboration with IMAGINE ID and as a thank you for their continuing involvement in the project, all of the families that have joined the project received a free copy in the post.听

You can watch an audio-visual presentation of the book

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IMAGINE Family Day

On Sunday 7 July 2019 we hosted an IMAGINE ID Family Fun Day in Coventry. It was a relaxed day for our fabulous families with lots of hands-on craft activities for the whole family based around our children鈥檚 book, Avery. We hope to have more Family Fun Days during IMAGINE-2.

Find out more about the day
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