Collaboration for Down Syndrome Progress (CDP)
Start Date
5/1/2026
Completion Date
8/31/2029
Summary
The Collaboration for Down Syndrome Progress (CDP) is a long-term study that follows people with Down syndrome of all ages. The goal is to better understand their health, development, and everyday experiences over time. Participants and their caregivers will answer questions, share medical information, and may give samples like blood or saliva. Some participants may also take part in optional activities such as sleep studies, movement tracking, or brain imaging. By collecting the same types of information at many sites, the CDP will help researchers learn why certain health conditions are more common in people with Down syndrome and how to improve care and quality of life.
Detailed Description
The Collaboration for Down Syndrome Progress (CDP) is a multisite, prospective longitudinal cohort designed to systematically characterize health, neurodevelopmental, neurobehavioral, and biological trajectories in individuals with Down syndrome across the lifespan. The CDP establishes a harmonized data collection framework implemented across U.S. and international clinical research sites to generate a large, integrated dataset suitable for cross-sectional and longitudinal analyses. Participants undergo standardized assessments that include medical history, neurobehavioral evaluations, physical examinations, and review of electronic health records. Biospecimens-including blood, saliva, and tongue swabs-are collected to support genomic, transcriptomic, proteomic, metabolomic, and microbiome analyses. These samples are processed and stored within the Down Syndrome Biorepository for current and future research use. The CDP also incorporates several optional subsample studies that provide deeper phenotyping in key domains relevant to co-occurring conditions in Down syndrome. These include home sleep apnea testing, wearable activity monitoring, neuroimaging using MRI, and metabolic and endocrine laboratory profiling. Each subsample follows additional standardized procedures to ensure comparability across sites. All data generated through the CDP are curated and transferred to the NIH INCLUDE Data Hub, where they are made available in de identified form to qualified researchers. The resulting dataset is intended to advance understanding of co-occurring conditions, identify risk and resilience factors, and inform the development of evidence-based clinical practices and future therapeutic interventions for individuals with Down syndrome.
Eligibility Criteria
Age Range: No minimum to No maximum
Conditions
Locations
University of California Irvine
Orange, California 92868
United States
University of Colorado Anschutz Medical Campus
Aurora, Colorado 80045
United States
University of Miami
Miami, Florida 33136
United States
Kansas University Medical Center
Kansas City, Kansas 66160
United States
John Hopkins University
Baltimore, Maryland 21287
United States
University of Minnesota
Minneapolis, Minnesota 55455
United States
Washington University in St. Louis
St Louis, Missouri 63108
United States
University of North Carolina at Chapel Hill
Chapel Hill, North Carolina 27599
United States
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania 19104
United States
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania 19104
United States
University of Pittsburgh
Pittsburgh, Pennsylvania 15203
United States
St. Jude Children's Research Hospital
Memphis, Tennessee 38105
United States
Texas Children's Hosptial/Baylor College of Medicine
Houston, Texas 77030
United States
University of Texas Health Science Center at San Antionio
San Antonio, Texas 78207
United States
University of Washington
Seattle, Washington 98195
United States
University of Wisconsin-Madison
Madison, Wisconsin 53705
United States