Genetic Research Benefits
How does a genetic research study benefit those taking part? Does research only help and become especially relevant to families years later, once the study has ended and conclusions been made?
IMAGINE ID feels strongly about providing help to families now, as well as in the future.
Over 1600 participants have been recruited to the IMAGINE ID study. They each receive a personalised report highlighting their child’s strengths and difficulties. Families find these reports useful to share with other family members, schools or specialists to better understand their child. Every participant also receives a copy of Avery, our beautifully illustrated children’s book written about families affected by rare disease. Reviews have told us that siblings in particular have been able to relate to the story.
How can you help?
We would like your feedback in order to show our recruiters how families are benefiting from the IMAGINE ID genetic study.
Has our study been worthwhile for you and your family? Have you found the personalised report useful? How has your overall experience working with the IMAGINE ID team been?
We are looking for short videos or sound recordings of your comments about IMAGINE ID (taken on your phone is absolutely fine). Perhaps you live in London and would be happy to give a short talk to our team at the end of October?
If you are able to answer some of these questions we would very much appreciate your feedback!
Please send your videos/recordings/comments to imagine.id@nhs.net or contact us for more information.
