by Emily Stembridge
A joint project between the Vanderbilt Kennedy Center (VKC) and the Vanderbilt Center for Cognitive Medicine will help deliver Alzheimer’s disease therapies and treatments to people with Down syndrome (DS).
Since people with DS have an extra copy of chromosome 21 — the same chromosome that carries the gene coding for amyloid protein, which is involved in the development of Alzheimer’s disease — older adults with DS are at a high risk for the disease. More than half of people with Down syndrome develop Alzheimer’s during their life.
Excess amyloid protein from the extra copy of chromosome 21 can also cause people with DS to develop Alzheimer’s disease at earlier ages than the general population.
The goal of the project, called TRC-DS (Trial-Ready Cohort — Down Syndrome), is to identify individuals over age 35 with DS, obtain information about how they are functioning and evaluate their brain activity and structure. This work will identify individuals with DS who may be eligible for a future medication study with the goal of reducing their risk for the development of Alzheimer’s disease.
“Establishing a well-characterized group of individuals who can potentially participate in groundbreaking treatment and prevention research will be critical for our understanding of how best to prevent Alzheimer’s disease for people with Down syndrome as well as other individuals with Alzheimer’s disease,” said Paul Newhouse, MD, professor of Psychiatry and Behavioral Sciences, Jim Turner Professor of Cognitive Disorders and director of Psychiatry’s Center for Cognitive Medicine.
“Individuals in this cohort will be among the first people with Down syndrome to be offered the opportunity to participate in a prevention and treatment study to hopefully slow down or prevent the development of Alzheimer’s disease. We are delighted to have this opportunity to partner with the Down syndrome community in this critically important effort to improve the quality of life for our friends with Down syndrome and their families, and we look forward to being of service to this community for years to come,” Newhouse said.
Individuals eligible to join this research study are adults with DS who are at least 35 years old and not pregnant. This study is being conducted by the Alzheimer’s Clinical Trials Consortium — Down Syndrome (ACTC-DS) through a grant from the National Institute of Aging.
“We know that adults with Down syndrome experience a much higher rate of Alzheimer’s than the general population at an earlier age,” said Elise McMillan, JD, co-director of the Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities and senior associate in Psychiatry and Behavioral Sciences. “Yet, little is known about treatment and support for these individuals and their families. As a professional who works in the area of disabilities and the parent of an adult son with Down syndrome, I’m very encouraged that Dr. Newhouse and his team are part of this important study.”
Alzheimer’s disease is the most common type of dementia. It begins with memory loss and can lead to other cognitive difficulties such as getting lost, repeating questions and even personality changes. For people with Alzheimer’s, changes can start in the brain 15 to 20 years before problems with memory and daily functioning begin. With this cohort and its subsequent research, the VKC hopes to be able to tell if someone is at risk before changes in the brain begin and provide early intervention to help prevent Alzheimer’s or make the disease less severe.
Participants will take part in the study for approximately two years. During those two years, participants will have three study visits at the research site and two visits over the phone. To learn more or enroll in TRC-DS, please visit https://www.vumc.org/ccm/trcds or email Amy Boegel (amy.r.boegel@vumc.org).