Advocate Health Care is enrolling adults with Down syndrome for the first research study in the Down Syndrome Clinical Trials Network Supported by LuMind IDSC Foundation

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On the Advocate Lutheran General Hospital campus, Park Ridge, Illinois, Advocate Medical Group Adult Down Syndrome Center researchers are enrolling adults with Down Syndrome who are older than 25 in the Longitudinal Investigation for Enhancing Down Syndrome Research Study (LIFE-DSR). The goal of the study is to better understand the health issues people with Down syndrome face as they age, particularly their risk for Alzheimer’s disease and dementia.

Photo of Karen Gaffney and Ryan Hartman

Karen Gaffney, Down syndrome research advocate, and Ryan Hartman, LuMind IDSC Foundation Board of Directors. Photo provided by LuMind IDSC Foundation.

“In spite of recent advances in medical care, adults with Down syndrome continue to face very significant challenges, including a markedly increased risk of Alzheimer disease. We hope that this work will lead to better treatments for older people with Down syndrome,” said Brian Chicoine, MD

On the Advocate Lutheran General Hospital campus, Park Ridge, Illinois, Advocate Medical Group Adult Down Syndrome Center researchers are enrolling adults with Down Syndrome who are older than 25 in the Longitudinal Investigation for Enhancing Down Syndrome Research Study (LIFE-DSR). The goal of the study is to better understand the health issues people with Down syndrome face as they age, particularly their risk for Alzheimer’s disease and dementia.

“In spite of recent advances in medical care, adults with Down syndrome continue to face very significant challenges, including a markedly increased risk of Alzheimer disease,” said Brian Chicoine, MD, site principal investigator for Advocate Health Care and cofounder and medical director for the Advocate Medical Group Adult Down Syndrome Center. “We are excited to be participating in the LIFE-DSR study and hope that this work will lead to better treatments for older people with Down syndrome.”

Diagnosing Alzheimer’s is complex, particularly in people with Down syndrome. With no single test currently available, diagnosis is based on an individual’s history, physical examination and cognitive testing. The LIFE-DSR study will observe adults with Down syndrome to validate tests of cognition and function designed specifically for adults with Down syndrome. The clinical trials network will also collect blood samples from all study participants to aid in the development of blood tests for Alzheimer disease.

The clinical trials network is sponsored by Alana Foundation and biopharmaceutical companies, AC Immune and Lundbeck with $3 million in initial funding. LuMind IDSC Foundation directs the clinical trials network. Through a research grant, Advocate received more than $300,000 from LuMind IDSC to participate as the first clinical trial site in Illinois.

“We believe that the clinical trials network will open up greater access to clinical research for people with Down syndrome and that is why LuMind IDSC is excited to be providing funding and leadership for the first study in the network, the LIFE-DSR study,” said Hampus Hillerstrom, LuMind IDSC chief executive officer.

Researchers will enroll more than 270 adults with Down Syndrome older than 25 in the LIFE-DSR study nationwide and follow them for two years. Eligible study subjects must have a study partner, and both must provide consent to participate. Participants who enroll through Advocate Health Care will be compensated $50 for each completed visit (three total) and reimbursed for up to $50 for travel costs for visits.

“We’re pleased to collaborate on this innovative trial designed for patients with Down syndrome,” said Katie Wozniak, director of specialty research for Advocate Research Institute. “It is a privilege to serve this important community and to partner in efforts that may advance their future care and diagnostic testing.”

To learn more about the LIFE DSR Study, contact Monika Kapinos at 847-723-2243 or LGH-LIFE-DSR@advocatehealth.com.

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Marly Chevrette - Marketing Director
LuMind IDSC Foundation
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