Dear All
Are you a practitioner or researcher who works with people with Down Syndrome, Fragile X Syndrome and/or Williams Syndrome? Please complete our ten-minute survey to help determine research priorities.
I am part of a team of researchers (with Dr Laura Cristescu, Prof Liz Pellicano, Prof Jo Van Herwegen, Prof Gaia Scerif) who are working on a study funded by the Baily Thomas Charitable Fund. The study involves determining the research priorities for people with genetic syndromes: Shape Research, Change Lives: Setting priorities in genetic syndrome research. Our study focuses on the Down Syndrome, Fragile X Syndrome and Williams Syndrome communities.
One aim of the study is to understand the priorities of the Down Syndrome, Fragile X Syndrome and Williams Syndrome communities and compare them to the current research landscape. We have conducted a review of the research funded and literature published in the last 10 years in the UK. We would now like to find out how these findings compare with the priorities of the Down Syndrome, Fragile X Syndrome and Williams Syndrome communities. We will bring together the responses from all participants in a report we can send you. We will report your research priorities to researchers, people who fund research, and people who make decisions about public services.
We would like to invite you as a practitioner or researcher working with individuals with Down Syndrome, Fragile X Syndrome or Williams Syndrome, to take part in an online survey which should take about 10 minutes to complete.
We kindly ask you to complete our survey by 10th March 2024.
This study has been issued a Favourable Ethical Opinion by the University of Surrey Ethics Committee (REF: FHMS 22-23 222 EGA).
If you have any questions, queries or concerns, please do not hesitate to get in touch by contacting Dr Laura Cristescu at l.cristescu@surrey.ac.uk.
Click here to complete the survey: https://surreyfahs.eu.qualtrics.com/jfe/form/SV_9BogNeaw2ZQPDBY
Watch our video here:
Professor Emily K. Farran
University of Surrey
School of Psychology
Guildford
Surrey, GU2 7XH