Make a difference by joining TRC-DS

People with Down syndrome can help find treatments, and one day a cure, for Alzheimer’s disease.

Researchers want to deliver the most promising Alzheimer’s treatments to people with Down syndrome, but they cannot do it alone.

Because people with Down syndrome have the same brain changes as those with Alzheimer’s disease, they are at very high risk for Alzheimer’s disease dementia and are an important population to consider as we develop therapies for Alzheimer’s research.

About TRC-DS

The Trial-Ready Cohort-Down Syndrome, or TRC-DS, matches people with Down syndrome to clinical trials related to Alzheimer’s disease. TRC-DS routinely monitors study participants for any changes to their brain health or function over time through blood tests and brain imaging to eventually match them with applicable Alzheimer’s disease clinical trials. Because participants are routinely evaluated, researchers can fast-track them for enrollment into qualifying clinical studies as soon as they are eligible and matched with one.

TRC-DS participants become part of a community of potential clinical trial participants who could help find a cure for Alzheimer’s disease.

Who is eligible?

Because Alzheimer’s disease affects people with Down syndrome at a much earlier age than the general population, researchers are looking for participants in their mid-20s through mid-50s to participate in research to see the earliest brain changes associated with the disease.

TRC-DS seeks at least 250 people with Down syndrome as participants.

Who is Eligible?

Why Down Syndrome?

Alzheimer’s disease occurs in people with Down syndrome because their extra copy of chromosome 21 carries the amyloid precursor protein gene. This results in the buildup of abnormal proteins in the brain—called amyloid plaques and tangles—which can lead to Alzheimer’s disease dementia. This amyloid buildup occurs by age 40 for virtually all people with Down syndrome—much earlier in life than in the brains of others who develop Alzheimer’s disease. Because of this link, people with Down syndrome helped researchers discover the genetic relationship between the amyloid gene and the buildup of amyloid plaques of Alzheimer’s disease almost 40 years ago. It is now time to bring the latest discoveries in the Alzheimer’s field to those with Down syndrome.

Interested participants should contact their nearest TRC-DS research location

How it works

People with Down syndrome can make a difference in Alzheimer’s research.

Healthy participants between the ages of 25 and 55 with Down syndrome can enroll in TRC-DS as a first step towards participating in new clinical trials. TRC-DS participants become part of a large, international community of potential clinical trial participants who could help find a cure for Alzheimer’s disease in those with Down syndrome.

Interested and eligible participants should contact their nearest research center for an in-person evaluation. There are currently several TRC-DS research centers in the United States and Europe.

The in-person evaluation consists of a physical exam and other medical tests (including a blood

draw and brain imaging scans), and memory skills assessments to measure initial brain health and function.

Once evaluated and deemed eligible, participants enroll in TRC-DS where they continue in-person visits once every 16 months until deemed eligible for an enrolling Alzheimer’s disease clinical trial.

Who’s Involved

TRC-DS is funded by the National Institutes of Health’s INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project, in partnership with: ACTC-DS and ABC-DS.

The project is led by:

Michael Rafii MD, PhD

Principal Investigator of the NIH-funded Alzheimer’s Clinical Trial Consortium - Down Syndrome (ACTC-DS)

Professor of Clinical Neurology at the University of Southern California’s Keck School of Medicine.

A Broad Movement

TRC-DS is part of a larger movement working with people with Down syndrome to advance Alzheimer’s disease therapies and potential cures for this population.

The Alzheimer’s Clinical Trials Consortium-Down Syndrome (ACTC-DS) is a large collaboration of researchers conducting clinical trials for Alzheimer’s disease in people with Down syndrome. TRC-DS is the first of these studies and has the goal of creating a group of eligible participants with Down syndrome who are interested in participating in future clinical trials.

The ACTC-DS coordinating center is based at the University of Southern California’s Alzheimer’s Therapeutic Research Institute and conducts research studies across several international clinical sites. Additionally, ACTC-DS is working closely with the Alzheimer’s Biomarkers Consortium-Down Syndrome (ABC-DS), an observational study of Alzheimer’s disease in people with Down syndrome. ABC-DS and TRC-DS have partnered together to co-enroll participants in both studies at all ABC-DS sites.