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.

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

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.
Portrait of senior parents with disable adult daughter.
TRC-DS volunteers become part of a community of potential clinical trial volunteers 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 volunteers in their mid-30s through mid-50s to participate in research to see the earliest brain changes associated with the disease.

TRC-DS seeks at least 120 people with Down syndrome as volunteers.

Who is Eligible?

Healthy adults between the ages of 35 and 55 with Down syndrome

People interested in supporting clinical research

People who will visit their nearest research center once every 16 months for physical exams like blood pressure checks and blood draws, memory skills tests, and brain scans to measure changes in their brain health and function

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 volunteers should contact their nearest TRC-DS research location

How it works

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

Healthy volunteers between the ages of 35 and 55 with Down syndrome can enroll in TRC-DS as a first step towards participating in new clinical trials. TRC-DS volunteers become part of a large, international community of potential clinical trial volunteers who could help find a cure for Alzheimer’s disease in those with Down syndrome.
 
Interested and eligible volunteers should contact their nearest research center for an in-person evaluation. There are currently 12 TRC-DS research centers in the United States and three in Europe.
 
 

The in-person evaluation consists of a physical exam, medical tests (such as a blood draw and brain imaging scans), and memory skills assessments to measure initial brain health and function.

Once evaluated and deemed eligible, volunteers 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) initiative, in partnership with ACTC-DS and ABC-DS.

ABC-DS
National Institute of Health
ACTC-DS

The project is led by:

Michael Rafii MD, PhD

Michael Rafii MD, PhD

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

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

A Broad Movement

Portrait of smiling special needs employee in industry
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
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 volunteers 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 15
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.