World’s first research network focused on sleep issues and Down syndrome launched 9th June 2025

Researchers from institutions across the UK gathered in London to foster cooperation in tackling sleep disorders that can profoundly affect health and development in the Down syndrome community.

The Down Syndrome and Sleep Research Network (DSSRN) was officially launched on Monday at the conference hall of the National Council for Voluntary Organisations, as an initiative to bring scientists together to concentrate on one of the highest priorities and most promising focal points for improving quality of life for people with Trisomy 21.

Sleep issues are common in people with DS, being detected up to ten times more than in typically developing peers. Researchers are keen to explore how improvements in sleep could positively impact development, cognition, chronic illnesses, and also longevity in a population whose life expectancy is at least 20 years lower than average.

Presenters included academics and researchers from University of Cambridge, Kingston University, Royal Holloway, Great Ormond Street and other institutions, presenting on their individual work and setbacks they have faced as researchers. A panel discussion with five interdisciplinary researchers generated a lively conversation on the challenges and opportunities in this area.

Keynote speaker Dr Lizzie Hill (Senior Lecturer in Sleep Physiology, University of the West of England (UWE Bristol) said “All of us in this room have heard something to the effect that ‘people with Down syndrome don’t sleep well’ or 'it's just part of the condition', but that doesn't mean we shouldn't investigate and treat these as we would for anyone else.”

A poll of attendees on the day showed that 55% of attendees were currently involved in research, and 45% planning / would like to get involved, but experiencing barriers including lack of funding, lack of time and high workload, lack of research skills and knowledge, lack of support, bureaucracy and admin issues, ethics and regulatory processes, difficulty finding collaborators. Many of these issues were addressed on the day to explore ways forward.

The DSSRN has secured funding for its startup year with generous grants from Hospital Saturday Fund, the Baily Thomas Charitable Trust, and the Sir Samuel Scott of Yews Trust, and the Launch Event was sponsored by Inspire Medical Systems and Idorsia. The DSSRN’s founding and launch have been coordinated by the Down Syndrome Research Foundation UK (DSRF UK), a charity promoting and funding medical research to improve the lives of people with Down syndrome since 1996.

DSRF UK’s Chair Dr. Elizabeth Corcoran said: “It has been a dream to bring these highly renowned researchers together to begin pooling their knowledge and expertise. We have great hope that with their combined insights, we’ll see breakthroughs in science in this area. This will yield new treatments that will give people with Down syndrome better sleep, from early childhood to adulthood, which will be a foundation for much healthier and longer lives.”

If you wish to stay in contact for updates, please fill out the form here: https://dssrn.org.uk/contact

Queries for the Down Syndrome and Sleep Research Network can be directed to: info@dssrn.org.uk