The DSSRN (Down Syndrome and Sleep Research Network) held its first ever online meeting on Monday 23rd March 2026, bringing together researchers and practitioners focused on sleep and Down syndrome. The meeting centred on creating the right conditions for better coproduction and inclusion in sleep research for people who have Down syndrome. Our update here on the webinar comes with a practical request for input from people in the Down syndrome community: please see below!
Webinar bringing researchers and professionals together
A recording of the presentation is available here. Participants joined the meeting from various international locations including England, Scotland, Ireland, the United States, Brazil and Belgium. A wide range of research organisations, practitioners of various disciplines, and charities were represented at the lunchtime webinar.
The DSSRN was created as a bridge between individuals and groups who have excellent practices and expertise to offer, and newcomers to the practice of including people with Down syndrome and other learning disabilities in sleep research. Both ends of the spectrum of expertise were well represented during the meeting: some with pressing questions, and others with excellent answers. It was encouraging to see resources and recommendations being shared between participants at the meeting.
The Network aims to accelerate sleep research by bringing the right experts together, acting as a catalyst for creating better resources and practices. We also want to help develop and mentor a gold standard for coproduction and inclusion of people with Down syndrome, which can be implemented by researchers and practitioners. One of our aims is to foster centres of excellence where people with Down syndrome have a real voice in the process of research.
Creating resources to explain sleep studies
Recently the DSSRN identified one practical issue to take action on. Since sleep disturbances are so common in the Down syndrome community, the likelihood that someone with Down syndrome will need to do a sleep study in their lifetime is much higher compared to typically developing individuals. Despite this, few resources exist to make sure that everyone is communicating clearly, and there is a scarcity of aids to understanding comfortably what is going to happen. It’s a big gap that makes it hard for both sides: researchers and research participants.
An excellent presentation was made during the webinar by our good friend Dr Eve Hirst and her brother Joshua, who had co-produced materials for the meeting. Joshua created, wrote, directed and presented a video about a recent trip to hospital from his lived experience as a person with Down Syndrome, and the presenting team discussed how Joshua prepares for medical procedures, including watching and also creating videos about the experience.
Focus group needed!
Followers of the DSSRN will be aware that Dr Eve Hirst has been developing a suite of tools to help researchers involve and communicate more effectively with people who have Down syndrome, and some of these new resources were showcased at the webinar. Soon, we hope that when people with Down syndrome need to have a sleep study, they can read, watch or listen to such custom-made materials that explain what to expect, and what the sleep study will look like. It was widely agreed at the webinar that these materials would be helpful to use in many settings.
Before we launch this pack, we need a panel of experts by experience who have Down syndrome, and also carers, to help us review the materials. We are looking for 10 participants to take part in this focus group, to review and discuss the material. Do you know anyone who would like to be involved? You can also bring someone to support you to this meeting.
Please see our easy-read invitation in the box below. We would be grateful if you could bring it to the attention of someone in the Down syndrome community who would be interested to help us.
This invitation is also posted on our social media: please forward to anyone who would be interested to participate!
Stay tuned for upcoming announcements about:
- The planned launch of the resource pack
- The next in-person meeting of the Down Syndrome and Sleep Research Network, and how professionals and researchers can register