An ambitious new research effort seeks to follow thousands of individuals with Down syndrome from infancy to adulthood in order to learn more about the chromosomal disorder.

The project from the National Institutes of Health known as the Down Syndrome Cohort Development Program, or DS-CDP, will collect biological samples, health information and other data that will then be made available to researchers in an anonymous fashion.

Participants will include people with Down syndrome who have historically been underrepresented in research, NIH officials 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,” said Dr. Diana W. Bianchi, director of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development.

The $20 million initiative is expected to start recruiting participants in the second half of 2025.

The Down Syndrome Cohort Development Program will be coordinated out of a center at the Research Triangle Institute in North Carolina. Research sites will be located at Baylor College of Medicine in Houston, Children’s Hospital of Philadelphia, the University of Colorado Denver, the University of Wisconsin-Madison and Washington University in St. Louis.

The new effort is part of NIH’s INCLUDE Project, which focuses on addressing health and quality-of-life issues for people with Down syndrome as well as co-occurring conditions like Alzheimer’s disease, autism, cataracts, celiac disease, congenital heart disease and diabetes.

“This initiative marks a significant step forward in collaboration among several NIH institutes, academic and medical institutions, and community partners,” said Tara A. Schwetz, deputy director for program coordination, planning and strategic initiatives at NIH. “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.”

In addition, those behind the project said they expect it to have broad health implications beyond those with Down syndrome.

“People with Down syndrome are at higher risk for conditions that are also common in the general population, such as Alzheimer’s disease. Therefore, advances resulting from INCLUDE will benefit the Down syndrome community and moreover, provide insights that are important in broader populations,” said Dr. Richard J. Hodes, co-chair of INCLUDE and director of NIH’s National Institute on Aging.

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.