The National Institutes of Health (NIH) joined governmental and private organizations interested in Down syndrome (DS), health care provider associations, and self-advocates to form the DS Consortium in 2011. Led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the DS Consortium encourages research on the health of people with DS and the exchange of DS information among Consortium members and members of the DS community.
Announcements
Looking for DS-Connect®: The Down Syndrome Registry?
The DS-Connect website paused operations in February 2024 to migrate to a new platform. During the pause, NIH and its partners will make improvements to the registry, while ensuring that existing data and accounts remain secure and confidential. NIH will provide updates to registered participants as the migration process continues.
Members of the DS Consortium and other partners will reach out to the DS community to prepare for the relaunch. In the meantime, the DS-Connect team is available to answer any questions at DSConnect@nih.gov.
Check Out This Video
DS Consortium Chair Dr. Melissa Parisi describes what #InclusionMeans and the INCLUDE Project 
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Findings Available
Polfuss, M., et al. (2023). Energy expenditure and weight-related behaviors in youth with Down Syndrome: A protocol. Frontiers in Pediatrics, 11, 1151797. doi: 10.3389/fped.2023.1151797. PMID: 37547107
Now Recruiting
- The Your View Study
Researchers at Purdue University are recruiting families with children between ages 2 and 5 years diagnosed with DS to record videos at home and help understand how children with DS explore their world at home. - Project ASPIRE (Assessing Skills that Predict Independence and Readiness for Employment) for Family Members of Adults with DS
Researchers at Drexel University are conducting a study to understand more about cognitive and behavioral factors that are associated with vocational outcomes and independent living in adults (age 22 to 35 years) diagnosed with DS.