New project launches to study Alzheimer’s disease prevention in people with Down syndrome

By Alzheimer's Prevention Bulletin


Researchers have long known that people with Down syndrome have a higher chance of developing Alzheimer’s disease as they age. Now, more studies are exploring the link between Down syndrome and Alzheimer’s and ways to prevent dementia in this population. The latest work in this area is the Trial-Ready Cohort – Down Syndrome (TRC-DS), part of the larger Alzheimer’s Clinical Trials Consortium – Down Syndrome (ACTC-DS).

“Our goal is to enroll 120 adults with Down syndrome who do not have dementia into a longitudinal study where we will learn about their memory and thinking skills in preparation for future clinical trials,” said Michael Rafii, MD, PhD, Medical Director, Alzheimer’s Therapeutic Research Institute and associate professor of neurology at the Keck School of Medicine of the University of Southern California (USC). “TRC-DS participants will also undergo a number of clinical and cognitive tests to help us better understand the relationship between cognitive decline and Alzheimer’s disease biomarkers.”

At high risk

Statistics show that people over the age of 65 with Down syndrome have a roughly 75% chance of developing Alzheimer’s disease dementia. Alzheimer’s dementia and its complications are the leading cause of death in people over 35 with Down syndrome. Researchers believe this is because people with Down syndrome are born with an extra 21st chromosome which includes a gene that predisposes them to Alzheimer’s and causes amyloid plaques in the brain to develop as early as 12 years of age.

Current Alzheimer’s studies have excluded people with Down syndrome because they were not designed to assess cognition in people with Down syndrome. It was also previously thought that people with Down syndrome would have difficulty participating in brain imaging studies such as MRI and PET scans However, cognitive assessments are now available for this population and multiple studies have shown that people with Down syndrome can indeed participate in imaging.

Highly motivated

“Adults with Down syndrome are highly motivated to participate in research because Alzheimer’s disease is a major concern for them and their loved ones,” said Dr. Rafii. “There is such a need to support this population.”

The Alzheimer’s Clinical Trials Consortium- Down Syndrome has more information on their website about the incidence of Alzheimer’s disease in Down syndrome.

The TRC-DS cohort is now enrolling. To learn more, visit the Trial-Ready Cohort – Down Syndrome study listing on