Down Syndrome Clinical Trials Network

The Down Syndrome Clinical Trials Network (DS-CTN) is a collaboration of multiple sites throughout the continental United States designed as a future framework to conduct large-scale, multi-site trials under the supervision of experienced clinicians who are experts at providing medical care for individuals with Down syndrome.

At present, the DS-CTN is focused on its founding project: the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) study. LIFE-DSR is a longitudinal cohort study of 270 adults with Down syndrome, their medical histories, and blood samples, as well as biomarker and neuropsychological testing data. LIFE-DSR is actively recruiting new participants and currently undergoing expansion. It has already yielded some preliminary data.

The 14 healthcare institutions represented in the LuMind IDSC Down Syndrome Clinical Trials Network reach thousands of people with Down syndrome and their families each year. Many sites are currently welcoming new patients for their clinical care services and enrolling participants in the LIFE-DSR study.

We encourage you to reach out to them for questions regarding your loved one’s health, to find referrals for a clinic near you, or to learn more about local opportunities for Down syndrome research.

Dignity Health, Barrow Neurological Institute (AZ) • University of California, Irvine (CA) • University of California, San Diego Health (CA) • Emory University (GA) • Advocate Health and Hospitals (IL) • Rush University Medical Center & Children’s Hospital (IL) • University of Kansas Medical Center (KS) • University of Kentucky (KY) • Massachusetts General Hospital – 2 campuses (MA) • Hugo W. Moser Research Institute, Kennedy Krieger Inc. (MD) • Duke University (NC) • Cincinnati Children’s Hospital (OH) • Case Western Reserve University (OH).

For more information, contact Aisha Vanderhorst, Assistant Clinical Project Manager in Research.