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Down Syndrome Clinical Trials Network-Study of Alzheimer's Disease


The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is an observational study with the goal of better understanding the cognitive and behavioral changes and health issues found in adults with Down syndrome as they progress toward Alzheimer's disease. LIFE-DSR is a study being run by the Down Syndrome Clinical Trials Network.

Minimum Age Maximum Age Gender Healthy Volunteers
25 Years N/A All No
June 30, 2019
December 30, 2023

  • Diagnosis of Down syndrome
  • Study partner who has regular interaction, can participate in annual clinic visits, and can respond to questions about the participant
  • Participant and study partner must be capable of reliably completing study assessments

  • Participants and study partners who are not able to complete trial procedures or adhere to the schedule of study assessments

Adults with Down syndrome are at increased risk for Alzheimer's disease, with estimates suggesting that 50 percent or more of people with Down syndrome will develop dementia due to Alzheimer's disease as they age. This study will assess changes in cognition, behavior, function, and health in people with Down syndrome for roughly 2 years in order to characterize the preclinical and early stages of Alzheimer's disease. Observations will incorporate medical history and measures of cognition, behavior, and function. Blood will also be collected for the development of biomarkers that could help identify and track disease progression.

For more information about this study or study sites, visit About LIFE-DSR.

Name City State Zip Status Primary Contact
Barrow Neurological Institute
Phoenix Arizona 85013 Recruiting Sandy Quintanilla
University California Irvine
Irvine California 92697 Recruiting Kelly Kilday
University of California, San Diego
La Jolla California 92093 Not yet recruiting Sandra Jerkins

Emory University
Atlanta Georgia 30322 Recruiting Helen Smith
Rush University Medical Center
Chicago Illinois 60612 Recruiting Melissa Baer
Advocate Health
Park Ridge Illinois 60068 Recruiting Monika Kapinos
University Of Kentucky
Lexington Kentucky 40536 Not yet recruiting

Kennedy Krieger Institute
Baltimore Maryland 21205 Recruiting Jen Bodensteiner
Massachusetts General Hospital
Boston Massachusetts 02114 Recruiting Ashlee Campbell
Massachusetts General Hospital
Charlestown Massachusetts 02129 Recruiting Kelsey Shelofsky
Duke University Medical Center
Durham North Carolina 27710 Recruiting Jane Ann Baker
Cincinnatti Children's Hospital Medical Center
Cincinnati Ohio 45229 Recruiting Kellie Voth
Case Western Reserve University
Cleveland Ohio 044106 Recruiting Melissa Stasko

LuMind IDSC Foundation

  • Alzheimer's Disease Cooperative Study (ADCS)

Name Phone Email
Duvia Lara Ledesma, MA (858) 246-5466
Carolyn Revta, MPH 858-229-4967


The Down Syndrome Clinical Trials Network (DS-CTN) Study of Alzheimer's Disease in Down Syndrome