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.
The study will help us to explore how genetic changes 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?
Our study involves working with both UCL and Cardiff University. The Cardiff Team would love to see you and your family for a ‘Face to Face’ visit, which are currently taking place virtually and at our Cardiff Clinic, although we hope to move back to in person visits again soon! 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 would also like to take a saliva sample from everyone who takes part and see you again in two years’ time. If you decide to take part in our Face-to-Face visits, 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, summarising our observations of your child.
You will also see our colleagues at UCL where you will be asked to complete an online interview and take part in an annual survey.
- You have a child aged between 6 and 25 who has been diagnosed with one of the following: 1q21.1 deletion or duplication, 2p16.3 (NRXN1)deletion, 3q29 deletion or duplication, 9q34 deletion (EHMT1), 15q11.2 deletion or duplication, 15q13.3 (CHRNA7) deletion or duplication, 15q11-q13 deletion or duplication, 16p11.2 deletion or duplication, 22q11.2 deletion or duplication or 22q13 (SHANK3) deletion.
- 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
Hannah: 02920 688316
More info: https://imagine-id.org/news/video/