The inaugural INCLUDE DS-CDP Network meeting took place virtually on February 11 and 12, 2025, bringing together an unprecedented group of experts to facilitate research that will impact the future health and quality of life for individuals with Down syndrome. The program aims to deepen our understanding of Down syndrome, accelerate knowledge of health conditions that more commonly affect those with Down syndrome and ultimately improve their quality of life.
The meeting opened with welcoming remarks from David Egan, self-advocate and author. A presentation on the importance of community engagement was delivered, emphasizing their value in advancing research. Six working groups met to discuss and define core data elements for the common protocol under development, including areas like sample collection, assessments, digital monitoring, and consent methods.
Key takeaways include:
- The DS-CDP values collaboration and communication between scientists, clinicians, and the Down syndrome community.
- Scientists are working closely with the community to develop a common data collection protocol that will best inform research questions to advance knowledge about Down syndrome.
- Recruitment is expected to begin in the latter half of 2025 after approval of the common protocol. The DS-CDP will continue to share updates as the protocol is developed.
- Research and advocacy communities are encouraged to participate in future requests for information and upcoming listening sessions.