A new long-term study to observe and track health data of people with Down syndrome from birth to adulthood has been launched by the US National Institutes of Health (NIH).
The initiative is led by NIH’s INCLUDE Project and is called the Down Syndrome Cohort Development Program (DS-CDP), which aims to engage and enroll thousands of individuals with Down syndrome, including those who have been historically underrepresented in Down syndrome research.
Participants will share biological samples, health information, and other data, which will be made anonymous and available to those in the research community. Recruitment for the US study is expected to begin in the latter half of 2025, with the programme expanding to include new study sites over the next five to ten years.
Diana W. Bianchi, INCLUDE Co-Chair and Director of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, said: “The goal of the new program is to deepen our understanding of Down syndrome, accelerate knowledge of health conditions that more commonly affect those with Down syndrome, and ultimately improve the quality of life for individuals and their families.”
As people with Down syndrome are at higher risk for conditions that are also common in the general population, such as Alzheimer’s disease, it is hoped that the new data will not only advance science and health for people with Down syndrome but also for the general population.
“This initiative marks a significant step forward in collaboration among several NIH institutes, academic and medical institutions, and community partners,” said Tara Schwetz, NIH Deputy Director for Program Coordination, Planning, and Strategic Initiatives. “It is the largest investment made by INCLUDE in its seven-year existence, and we believe it will not only increase participation in clinical research, but also diversify our study population.”
