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.
| Site Contact Information | Principal Investigator | City | ST |
| Sandy Quintanilla | Anna D. Burke, MD | Phoenix | AZ |
| Site Contact Information | Principal Investigator | City | ST |
| Eric Doran | Ira T. Lott, MD | Irvine | CA |
| Site Contact Information | Principal Investigator | City | ST |
| Bailey Hoffman | Elizabeth A Bevins Murphy, MD, PhD | San Diego | CA |
| Site Contact Information | Principal Investigator | City | ST |
| Dawn Jacob Laney | Amy Talboy, MD | Atlanta | GA |
| Site Contact Information | Principal Investigator | City | ST |
| Nicholas Armijo | Brian Chicoine, MD | Chicago | IL |
| Site Contact Information | Principal Investigator | City | ST |
| Melissa Baer | Cesar Ochoa Lubinoff, MD | Chicago | IL |
| Site Contact Information | Principal Investigator | City | ST |
| Kayla Meyer | Moya Peterson, PhD, APRN, FNP-BC | Kansas City | KS |
| Site Contact Information | Principal Investigator | City | ST |
| Roberta Davis | Frederick A. Schmitt, PhD | Lexington | KY |
| Site Contact Information | Principal Investigator | City | ST |
| Courtney Jordan | Diana Rosas, MD | Boston | MA |
| Site Contact Information | Principal Investigator | City | ST |
| Contact: Amy Torres | Stephanie Santoro, MD | Boston | MA |
| Site Contact Information | Principal Investigator | City | ST |
| Naomi Franklin | George Capone, MD | Baltimore | MD |
| Site Contact Information | Principal Investigator | City | ST |
| Gretchen Nichting | Priya Sunil Kishnani, MBBS | Durham | NC |
| Site Contact Information | Principal Investigator | City | ST |
| Kellie (Ramsdale) Voth | Anna J. Esbensen, PhD | Cincinnati | OH |
| Site Contact Information | Principal Investigator | City | ST |
| Melissa Stasko | Alberto Costa, MD, PhD | Cleveland | OH |
The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome.
Individuals 25 years and older can consider joining the study.
Thinking about participating in LIFE-DSR?
DSC2U is an online toolkit providing customized, expert-driven information for people with Down syndrome from age 1 through adulthood. When caregivers access DSC2U online, they are invited to share concerns, symptoms, medical issues, and behavioral diagnoses of their loved one with Down syndrome. Those data points are analyzed using state-of-the-art guidelines designed by nationally recognized Down syndrome experts. Immediately upon completion of the form, caregivers receive two personalized documents: one for themselves and one to share with their primary healthcare provider. Both documents contain detailed, customized suggestions, follow-up questions, and conversation prompts that are designed to optimize time with a primary care provider and offer caregivers the vocabulary and tools they need to advocate for their loved one. Visit www.dsc2u.org/ to get expert advice.
myDSC is a free digital resource available to the Down syndrome community through LuMind IDSC. After a simple registration process, you will have access to more than 800 reliable, vetted, and evidence-based resources related to Down syndrome. Find health and wellness information, articles and webinars, or submit a question to: Ask Dr. Chicoine, to have your medical question answered by a Down syndrome expert. Get started at: www.mydsc.org.
