Project Description: Emily Farran and Laura Cristescu, in collaboration with Jo Van Herwegen, Liz Pellicano and Gaia Scerif are working on a project on understanding the priorities for research for individuals with Down Syndrome, Fragile X Syndrome and Williams Syndrome, and their communities. For research to best have an impact on improving lives, we need to better understand the needs of your community and what matters to you; you are a key part of this project. The findings will drive new directions and real-life impact on Fragile X Syndrome research.
Giving children and adults with Fragile X Syndrome a voice via videocalls: We would like to speak to individuals with Fragile X Syndrome (from 10 years old to adults) about what is important to them and what they would like to find out about Fragile X Syndrome, via an online videocall. If you are interested in taking part in a videocall, we would love to hear from you.
Please register your interest in an online videocall on what research you would like to happen, at the following link: https://surreyfahs.eu.qualtrics.com/jfe/form/SV_8DtfhT40nl978DY.
Survey on research priorities for people with Fragile X Syndrome: For this part of the study, we aim to understand the priorities of the UK Fragile X Syndrome community 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 Fragile X Syndrome community. 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 to take part in an online survey about your research priorities. Parent/carers of children from birth to adults are eligible to take part. If your child/young person/adult with Fragile X Syndrome is aged 10 years to adult, they are also eligible to take part. Please note that this survey is for participants currently living in the UK. We kindly ask you to complete our survey by 10th March 2024. Click here to complete the survey: https://surreyfahs.eu.qualtrics.com/jfe/form/SV_dakTFPg9S2po2rQ
Watch our video here: https://shaperesearchchangelives.my.canva.site/surveyfxs
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 Laura at l.cristescu@surrey.ac.uk.