Who we are
About Us
The Down's Syndrome and Sleep Research Network (DSSRN) is a groundbreaking initiative launched by DSRF UK to address the urgent need for better understanding, diagnosis, and treatment of sleep disorders in individuals with Down's Syndrome (DS). Sleep-related issues affect up to 75% of people with DS, often leading to significant impacts on their cognitive development, mood, and overall well-being. Despite these challenges, families are frequently told that sleep problems are simply “normal” for individuals with DS, resulting in under-diagnosis and lack of adequate care.
The Down’s Syndrome Research Foundation UK (DSRF UK) recognised the pressing need for more focused research and collaboration in this area, and in 2024, established the DSSRN to bring together experts, resources, and research teams working in this field across the UK and Ireland. Our goal is to advance scientific knowledge, improve clinical care, and ultimately ensure that individuals with DS who experience sleep disorders receive the support and treatment they deserve.
Our Mission
Our mission is simple: to unite researchers, healthcare professionals, and stakeholders in the field of DS and sleep research, fostering collaboration to drive forward innovation, improve treatment, and enhance quality of life for individuals with DS.
By building a strong research network, we aim to create a space where professionals can collaborate on cutting-edge research, share valuable resources and data, and collectively solve the complex challenges surrounding sleep disorders in the DS community.
What Makes Us Unique
A DSRF UK Initiative: As a project spearheaded by DSRF UK, the DSSRN builds on the Foundation’s long-standing commitment to advancing knowledge and care for individuals with Down's Syndrome. With a focus on practical solutions and tangible outcomes, we aim to fill the gaps in current research and care.
Exclusive Focus on DS and Sleep: Sleep disorders are common in the general population, but individuals with DS face unique challenges. The DSSRN is the first of its kind to exclusively focus on these challenges, ensuring that research is directly applicable and beneficial to those in the DS community.
Collaborative Effort: We foster collaboration between independent research groups, pooling resources, data, and expertise to accelerate progress. This approach enhances the efficiency and effectiveness of studies in sleep research, leading to faster, more impactful results.
Our Goals
Promote Research Collaboration: By bringing together researchers, clinicians, and other professionals, the DSSRN encourages joint projects that can lead to significant advancements in understanding and treating sleep disorders in DS.
Resource and Knowledge Sharing: Our network facilitates the sharing of tools, research findings, and expertise, ensuring that important discoveries reach the wider community more quickly and effectively.
Improve Clinical Care: By advancing research, we aim to develop new diagnostic tools and treatment protocols that will improve the standard of care for individuals with DS who experience sleep disorders.
Raise Awareness: Sleep problems in DS are often dismissed or overlooked. Through our network, we advocate for greater awareness among healthcare providers, caregivers, and the DS community about the importance of diagnosing and treating sleep disorders.
Our Vision for the Future
The Down's Syndrome and Sleep Research Network is the first step toward building a global community dedicated to improving sleep health for individuals with DS. While we are starting in the UK and Ireland, we plan to expand our reach internationally, collaborating with research institutions worldwide.
Together, through the leadership of DSRF UK, we can drive forward groundbreaking research, improve clinical outcomes, and ultimately ensure that individuals with DS can lead happier, healthier lives free from the debilitating effects of untreated sleep disorders.
