The INCLUDE (INvestigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome) Project's Collaboration for Down Syndrome Progress (CDP) Program
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.
• Individual with Down syndrome
⁃ To be considered potentially eligible for this CDP, a participant must meet the following criteria:
• Diagnosis of Down syndrome (with the exception of control participants for the Subsample study on Imaging). We will be enrolling participants with all types of Down syndrome including standard Trisomy 21, mosaic Down syndrome, and translocations.
• Primary language is English, Spanish, or Portuguese.
⁃ Support Person
• Able to attend in-person or remote visits.
• Able to provide accurate information about the study participant's clinical outcomes and family history.
• Primary language is English, Spanish, or Portuguese.
⁃ Biological parent(s) biospecimen collection
• Biological parent of the enrolled participant.
• Willing to provide a biological sample.
• Primary language is English, Spanish, or Portuguese. Imaging subsample study controls
• A subset of controls will be enrolled to match a cohort of individuals who take part in the CDP Subsample Study on imaging. Healthy control infants must be born at greater than 36 weeks gestational age and must have at least one older sibling. The sibling criterion allows comparability for potential analyses combining control data from DS-CDP with analogous control data previously collected by IBIS for other neurodevelopmental studies.