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, and was followed by the CDP team that highlighted the collaborative nature of the initiative. A presentation on the importance of Community Advisory Boards 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.
On the second day, there was a summary of a prior workshop on electronic health record sharing followed by progress updates from each of the DS-CDP working groups. The DS-CDP is excited to move this research forward and will continue to share updates with the Down syndrome community as the study progresses. The community, including families, self-advocates, scientists, clinicians and other invested partners, are encouraged to participate in future requests for information and upcoming listening sessions. Recruitment is expected to begin in the latter half of 2025, once the common protocol is finalized and approved.