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US Department of Health and Human Services National Institutes of Health
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 * About
   * About
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FULL MAIN NAVIGATION

 * About
   * About
   * Members
   * History
 * Clinical Research & Trials
   * Clinical Research & Trials
   * Clinical Trials Search
 * Meetings
 * Research
 * Resources
   * Resources
   * English Glossary
   * Spanish Glossary


WELCOME TO THE DOWN SYNDROME CONSORTIUM

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.

 * Learn About the NIH INCLUDE Project

 * Access the 2023 NIH INCLUDE Down Syndrome Research Plan.

 * Find Clinical Trials Related to DS

--------------------------------------------------------------------------------


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 .


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.

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