DS-Connect®: The Down Syndrome Registry

Are you a self-advocate or a family member of someone with Down syndrome? We suggest joining the DS-Connect® Registry to securely add your or a loved one’s health info to help researchers learn more about Down syndrome. Once registered, you can also access useful information like:

  • Research studies currently enrolling individuals with Down syndrome
  • Modern platform to complete health surveys
  • Latest news, events and resources
  • Upgraded website in English and Spanish with next-level user friendliness

The studies below were provided by DS-Connect® and are currently enrolling.

Project ASPIRE -- Assessing Skills that Predict Independence and Readiness for Employment
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 skills among young adults with Down syndrome.
Learn more
Sleep Study for Children with Down syndrome 6 to 25 years of age
The Children’s Hospital of Philadelphia is currently recruiting children/young adults with Down Syndrome ages 6 to 25 for a sleep research study. Researchers are investigating at-home sleep studies in children and young adults with Down syndrome.
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Trial-Ready Cohort- Down Syndrome (TRC-DS)
The Alzheimer’s Clinical Trials Consortium-Down Syndrome (ACTC-DS) invites you to participate in the Trial-Ready Cohort- Down Syndrome (TRC-DS). TRC-DS is a community of potential clinical trial volunteers who could help find a cure for Alzheimer’s disease. The purpose of TRC-DS is to enroll healthy adults with DS across 15 international sites to determine longitudinal cognitive, clinical and biomarker trajectories in the persons with DS and to accelerate enrollment into clinical trials.
Learn more