On March 21st, 2025, also known as World Down Syndrome Day, the National Institutes of Health (NIH) announced the relaunch of DS-Connect®: The Down Syndrome Registry.
NIH launched the registry in 2013, and after a temporary pause, the INCLUDE study is now managed by the University of Colorado in close collaboration with NIH. The registry supports research participation and provides resources for people with Down syndrome, their families and scientists. The mission of DS-Connect® is to advance research to help people with Down syndrome live longer, healthier lives.
The new registry features include an updated website in English and Spanish, updated health surveys and the sharing of anonymized data with the INCLUDE Data Hub.