18 Oct 2024

We are delighted to announce that funding has been secured for the creation of a Down Syndrome Sleep Research Network. This will allow for increased collaboration among researchers and create better quality research, designed to benefit the specific needs of the DS community. The research focus of this network is high priority for individuals with DS, considering the disproportionately high incidence of sleep issues in this community.

Prevalence studies suggest that around 75% of people with DS experience sleep problems, including greater sleep anxiety, night-time waking, parasomnias, and sleep respiratory disorders, than typically developing individuals. At least 50% of those with DS are affected by obstructive sleep apnoea, compared to just 1-4% in the general population.

“Too often issues children and adults with Down syndrome encounter around sleep are not well understood or treated. There is a lack of evidence for the best type of treatment or what to do if treatments fail for an individual’s circumstances. This Network will work to find and address these questions and issues together with the teams who want to improve the situation but are hampered by all sorts of barriers”  -Dr Liz Corcoran, Chair of the DSRF UK

Better knowledge and understanding of these issues will lead to evidence-based treatments and acute services, and will allow us to promote better education on this subject.

We are also responding to a need expressed by our research partners, who can face significant challenges in funding and recruiting for these necessary studies. Research Networks are beneficial from many angles, overcoming the obstacles that can overwhelm individual researchers. Among other advantages, a Research Network will:

  • Helps researchers to find relevant funding
  • Encourage pooling of resources
  • Enable a bank of contacts (participants and stakeholders) to be built up
  • Facilitate sharing of data and best practices

The benefits are considerable and can help make research more effective, improve the quality of research, facilitate more collaboration, and allow for promotion of clearer channels for disseminating findings.

We are looking to recruit more scientists (medics, researchers, PhD candidates, etc) imminently for this Sleep Research Network. If you are interested, please visit this site:

To support the Network or sleep or other research please visit our donation page. We can’t do any of this without supporters like you.

More information on the official launch of this network, set for early 2025, will be forthcoming. Watch this space!