We have been asked by the team at iMAGiNE 2 to share details of a new research study: Intellectual Disability and Mental Health: Assessing Genomic Impact on Neurodevelopment in children with 3q29 deletion or duplication
About our study
We are a research team based across University College London and Cardiff University and we are interested in the experiences of individuals with rare genetic disorders. We are now in the second phase of our study called IMAGINE 2.
In the first phase of IMAGINE ID we successfully enrolled over 3,000 individuals and are incredibly grateful to all the families that have taken part. Using the information we collected, the IMAGINE ID study wants to answer a question that parents often ask when their child has a genetic condition: “So what does this mean for my child?”
IMAGINE 2 will continue to answer this important question by following up families who took part in IMAGINE 1. However, we’re also now looking for new families who would like to take part.
We are particularly interested in exploring how 3q29 deletion and duplication affect children and young people’s behaviour and inform the care of families, both now, and in the future.
What is involved with taking part?
We would love to see you and your family for an in person visit at our Clinic. On these visits, we will interview you about your child and ask your child to do some puzzles, fun computerized activities, and answer some questions from us. We will also invite you to fill out some online surveys. We would also like to take a blood sample from everyone who takes part. If you decide to take part in our visit, your family will be given a £30 shopping voucher as a thank you. You will also receive a report from our research team at the end of your participation, summarizing our observations about your child.
- You live in the United Kingdom
- You have a child aged between 6 and 25 who has been diagnosed with 3q29 deletion or duplication.
- You have a doctor’s letter confirming your child’s genetic diagnosis
- You are able to travel to Cardiff University for an in-person clinic visit. If you require overnight accommodation this will be paid for, and fuel and meal costs reimbursed.
- Siblings are also eligible to take part as long as they are also aged 6-25, regardless of whether they also have a diagnosed genetic condition.
How to take part
If you would like to take part, please email imagineID@cardiff.ac.uk for more information, or contact one of our researchers on the numbers below:
Lauren: 02920 688065 Poppy: 02922 512286