"Shifting and sharing the power" in research: Views and perspectives on research priorities from the Down syndrome, Fragile X syndrome and Williams syndrome communities

People with intellectual disabilities and their communities are rarely involved in setting priorities for research. Our study addressed this gap through consultations with the UK communities of three genetic syndromes in which intellectual disabilities are common: Down syndrome (DS), Fragile X syndrome (FXS) and Williams syndrome (WS). The study aimed to provide an understanding of (1) the views of the DS, FXS and WS communities on current UK research; (2) their priorities for future research; and (3) participants views of engaging with UK research. We conducted focus group discussions with 39 community members including: children and adults with DS, FXS and WS; parent/carers of people with DS, FXS and WS; practitioners and researchers who work with these communities. Our study was carried out in collaboration with a Steering Group and two Advisory Groups of DS, FXS and WS community members. We identified three themes. First, participants shared their dissatisfaction with the current research landscape and wanted a more balanced landscape, with more research with direct application to the daily lives of people with DS, FXS and WS. Second, community members emphasised the importance of translating research into practice, advocating for better access to research and more meaningful participation to research of individuals with lived experience. Third, our study not only identified what should be the focus of future research on DS, FXS and WS, but also how researchers should conduct their research. Whilst including children in our sample was a strength, there were some limitations to the diversity of our sample; children with FXS were not represented and gender, ethnic and geographic diversity could have been broader. Nevertheless, we hope that our findings will change the future of research in this field so that research carried out in the name of individuals with intellectual disabilities such as DS, FXS and WS, is of direct use to these communities.