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.
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.
Study Type
OBSERVATIONAL
Enrollment
1,400
University of California Irvine
Orange, California, United States
NOT_YET_RECRUITINGUniversity of Colorado Anschutz Medical Campus
Aurora, Colorado, United States
NOT_YET_RECRUITINGUniversity of Miami
Miami, Florida, United States
NOT_YET_RECRUITINGKansas University Medical Center
Kansas City, Kansas, United States
NOT_YET_RECRUITINGJohn Hopkins University
Baltimore, Maryland, United States
NOT_YET_RECRUITINGUniversity of Minnesota
Minneapolis, Minnesota, United States
NOT_YET_RECRUITINGWashington University in St. Louis
St Louis, Missouri, United States
NOT_YET_RECRUITINGUniversity of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
NOT_YET_RECRUITINGThe Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
NOT_YET_RECRUITINGThe Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
NOT_YET_RECRUITING...and 6 more locations
Enrollment of Participants into the DS-CDP Common Protocol
The primary aim of the DS-CDP is enrollment of up to 1,400 participants with Down syndrome across the lifespan into the Common Protocol to support future cross-sectional and longitudinal research
Time frame: 4 years
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