Are UK Research Priorities Aligned? Comparing the Research Priorities of the Down Syndrome, Fragile X Syndrome and Williams Syndrome Communities, With the Research and Funding Landscape

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Abstract
There is a lack of understanding of how research activity in learning disability compares with community research priorities in the United Kingdom, where an estimated 1.5 million people live with a learning disability. Using Down syndrome (DS), Fragile X syndrome (FXS) and Williams syndrome (WS) as model conditions with learning disability, we address this gap. We present a systematic review of UK research funding and journal articles on DS, FXS, and WS from 2013 to 2022 (Study 1; research portfolio), and a survey consultation with UK community representatives ( N = 452; people with DS, FXS, and WS, parent/carers, practitioners, researchers) of research priorities and their reflections on the research landscape (Study 2). We report a dominance of DS, FXS, and WS research on basic science and less emphasis on research with direct application to daily life. Community representatives expressed dissatisfaction with the current research portfolio. Top research priorities related to: treatments and interventions; health; mental health; services; and lifespan issues. This indicates that the current research portfolio is misaligned to community priorities. Future research should strive to be more closely aligned to these.
Funding Information
  • Baily Thomas Charitable Fund (TRUST/VC/AC/SG/6299‐9546)
  • University of Surrey

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