Massachusetts General Hospital First to Enroll Adults with Down Syndrome in New Nation-Wide Research Study Supported by LuMind IDSC Foundation

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The Massachusetts General Hospital (MGH) Down Syndrome Program was the first approved research site in the first clinical trial in the Down Syndrome – Clinical Trials Network (DS-CTN) supported by LuMind IDSC Foundation. MGH is enrolling adults with Down Syndrome over the age of 25 in the Longitudinal Investigation for Enhancing Down Syndrome Research Study (LIFE-DSR) to better understand the health issues facing people with Down syndrome as they age, particularly their risk for Alzheimer’s disease and dementia.

Two older adults with Down syndrome cooking

Diagnosing Alzheimer’s is complex including in people with Down syndrome. The LIFE-DSR study will observe adults with Down syndrome to validate tests of cognition and function designed for them.

“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 Skotko, MD, MPP, the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital (MGH)

The Massachusetts General Hospital (MGH) Down Syndrome Program was the first approved research site in the first clinical trial in the Down Syndrome – Clinical Trials Network (DS-CTN). MGH is enrolling adults with Down Syndrome over the age of 25 in the Longitudinal Investigation for Enhancing Down Syndrome Research Study (LIFE-DSR) to better understand the health issues facing people with Down syndrome as they age, particularly their risk for Alzheimer’s disease and dementia. The Down Syndrome Program is one of two MGH sites participating in the LIFE DSR Study with the Department of Neurology expected to begin their recruitment later this year.

“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 Skotko, MD, MPP, the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital (MGH) and director of the MGH Down Syndrome Program. “More research is needed to determine the factors behind this disparity, leading to better treatments for adults with Down syndrome.”

Diagnosing Alzheimer’s is complex including 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 DS-CTN will also collect blood samples from all study participants to aid in the development of blood tests for Alzheimer disease.

“We believe that the DS-CTN 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.

The LIFE-DSR study is looking to enroll adults over 25 years of age with DS. Health care professionals, families and people with Down syndrome interested in participating in the MGH Down Syndrome Program study, contact 617-726-7954 or LIFE-DSR@partners.org.

The DS-CTN is sponsored by the Alana Foundation and biopharmaceutical companies, AC Immune and Lundbeck with $3 million in initial funding and direction is provided by LuMind IDSC.

For more information about the DS-CTN visit DS-CTN.org.

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Marly Chevrette - Marketing Director
LuMind IDSC Foundation
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