Thanks for speaking to us at the Genetic Disorders UK Symposium on Saturday – we discussed how you might be able to approach members with information about our project, IMAGINE-ID.
IMAGINE-ID is a research project funded by the Medical Research Council. We are studying the long term behaviour and mental health of children and young adults with intellectual disability where there is a genetic cause.
To be eligible for our study, children need to be aged 4 or over, have intellectual disability/learning difficulties/developmental delay and have a genetic diagnosis, which is thought to be the underlying cause of the learning difficulties.
This study involves parents/guardians filling in an online questionnaire (DAWBA) about their child. Once completed the assessment we will send them a DAWBA Report. The report will summarise their child’s strengths and difficulties and they may find it helpful with healthcare professionals and their child’s school.
For further information, please visit our website: http://imagine-id.org/ and for any queries we can be contacted on the details below.
Please find attached our promo pack, which contains some information about the project, plus some suggested tweets/post/links for social media users. Please feel free to edit as appropriate for your audience.
You mentioned on Saturday that it might be helpful when promoting us to your members, to know how many Wolf Hirschhorn Syndrome participants we already have in the study. I have looked in our database and unfortunately, the syndrome is not something we record, as this is not always mentioned on the genetics report. It is the genetic co-ordinates and details that we routinely note. I know you said it is a 4p deletion that causes Wolf-Hirschhorn, but I wouldn’t like to presume that all participants we have with a 4p deletion have this syndrome. Sorry I can’t be more specific about this.
Do let me know if you need any further information and thank you again for your interest and help in promoting our research study.