Understanding Rare
Chromosome and Gene Disorders
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IMAGINE ID: New Participants Urgently Needed

IMAGINE ID is collecting information about children and young adults with a genetic diagnosis related to learning disabilities. The study hopes to recruit 5,000 families worldwide and wants to answer the question parents most often ask when their child has a genetic condition; “So what does this mean for my child?”

What is involved? Parents complete an online questionnaire (or via phone/ face-to-face) about their child and soon after receive a personalised summary report. The report may be useful to help with assessments for school, services or specialist treatments.

Avery We wanted to acknowledge the children and families contribution to the project and the information gathered about them. We commissioned Marta Altes to write a book for children about rare disease and participating in research, Avery. The response to Avery has been overwhelmingly positive. Every family is sent a copy when they join the study; it is also available to purchase online.

We need your help! We have successfully recruited over 2,100 participants but we urgently need more…

To be eligible, individuals must be aged 4 and over, have a diagnosed genetic condition with intellectual disability, learning difficulties or developmental delay. To find out more information please visit IMAGINE ID or contact the team on imagine.id@nhs.net or 01223 254631