A man plays with his daughter who was born with Down syndrome. (Michael S. Wirtz/The Philadelphia Inquirer/TNS)
An ambitious new research effort seeks to follow thousands of people with Down syndrome from childhood to adulthood to learn more about the chromosomal disorder.
The National Institutes of Health project 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 anonymously.
Participants will include people with Down syndrome who have historically been underrepresented in research, NIH officials said.
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“The goal of the new program is to deepen our understanding of Down syndrome, accelerate knowledge of the health conditions that most commonly affect people with Down syndrome, and ultimately improve the quality of life for people and their families. families,” said Dr. Diana W. Bianchi. , director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the NIH.
The $20 million initiative is expected to begin recruiting participants in the second half of 2025.
The Down Syndrome Cohort Development Program will be coordinated from a center at the Research Triangle Institute in North Carolina. The research sites will be located at Baylor College of Medicine in Houston, Children’s Hospital of Philadelphia, the University of Colorado in Denver, the University of Wisconsin-Madison and Washington University in St. Louis.
The new effort is part of the NIH’s Project INCLUDE, which focuses on addressing health and quality of life issues for people with Down syndrome, as well as co-occurring conditions such as Alzheimer’s disease, autism, cataracts, celiac disease, heart disease congenital and diabetes. .
“This initiative marks an important step forward in collaboration among multiple NIH institutes, academic and medical institutions, and community partners,” said Tara A. Schwetz, NIH deputy director for program coordination, planning, and strategic initiatives. “It is the largest investment made by INCLUDE in its seven years of existence and we believe it will not only increase participation in clinical research, but also diversify our study population.”
Additionally, those behind the project said they hope it will have broad health implications beyond people with Down syndrome.
“People with Down syndrome have an increased risk of diseases that are also common in the general population, such as Alzheimer’s disease. Therefore, the advances resulting from INCLUDE will benefit the Down syndrome community and also provide knowledge that is important to broader populations,” said Dr. Richard J. Hodes, co-chair of INCLUDE and director of the National Institute on NIH Aging.
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