Shape Research, Change Lives report launch

Report launch: Shape Research, Change Lives: setting priorities in genetic syndrome research. We compared the research landscape to research priorities for individuals with Down syndrome (DS), Fragile X syndrome (FXS), and Williams syndrome (WS). Throughout we worked with an expert steering group and advisory groups with lived experience.

Key findings: There was £26 million of funding for research on DS, FXS and/or WS between 2013 and 2022. This represents just <1% of funder portfolios and only ~£35 per person with genetic syndrome per year. Most research was on basic science (brain, body and cognition), and the least research was on lifespan issues, societal issues and research infrastructure. We asked the DS, FXS and WS communities to comment. 70% were dissatisfied with the current research portfolio; they weighted research that will directly affect their everyday lives as just as necessary as the focus on basic science. 

We recommend that: research is informed by people with lived experience, in areas prioritised by community members; and that research findings are easy to access so that people can use research to assist real life decisions.