RecruitingOBSERVATIONAL

Trial-Ready Cohort-Down Syndrome (TRC-DS)

This study, called TRC-DS, is for adults aged 25-55 with Down syndrome. Researchers want to understand how Alzheimer's disease affects people with Down syndrome. They will collect information like brain scans, genetic tests, and memory assessments over time. This helps them identify the best ways to track the disease's progress. The goal is to make it easier and faster to test new treatments for Alzheimer's in people with Down syndrome in the future. The study is also working with another group, ABC-DS, allowing some participants to be part of both studies and share their health information to help scientists learn even more.

At a glance

Status

Recruiting

Sponsor

University of Southern California

Enrolment target

550

Start

07 Jun 2021

Estimated completion

31 Dec 2027

Down Syndrome Alzheimer Disease Dementia

What is this study about?

This research study, called the Trial-Ready Cohort - Down Syndrome (TRC-DS), is focusing on adults with Down syndrome between the ages of 25 and 55. We know that people with Down syndrome have a higher chance of developing Alzheimer's disease. The main goal of this study is to better understand how Alzheimer's disease progresses in individuals with Down syndrome.

To do this, researchers will gather a lot of information from participants over time. This includes checking memory and thinking skills, collecting blood and other samples, and doing brain scans. By carefully looking at how these measurements change, the scientists hope to find the best ways to check if new treatments for Alzheimer's are working in future medical trials. Essentially, they are building a strong foundation for future research that could lead to new medicines.

The TRC-DS study is also working closely with another research group called ABC-DS. This means some people can join both studies at the same time. If you participate in both, the information collected will be shared between the teams, helping scientists learn even more about Alzheimer's disease in Down syndrome. Becoming part of this study helps researchers prepare for and run new clinical trials more effectively, which is a vital step in finding treatments.

Key takeaways

Focuses on Alzheimer's in adults with Down syndrome.
Aims to improve future drug trials for Alzheimer's.
No new medicines are given in this study.
Involves health checks, memory tests, and scans.
Requires a reliable study partner.
Participation helps future treatment research.

Who may be eligible?

To join this study, you must be an adult with Down syndrome, aged between 25 and 55. You'll need to be in good general health and not have been diagnosed with dementia already. You should be able to understand and agree to take part, or have a family member or guardian who can agree on your behalf, and you must have someone reliable, like a family member or carer, who can provide information about you.

Additionally, you should be able to hear and see well enough for memory tests, and capable of understanding simple instructions. If you speak English or Spanish fluently, that's important too. You won't be able to join if you have serious or unstable health problems that might make it unsafe for you to participate, or if you can't have an MRI scan for medical reasons, such as having certain metal implants.

Quick self-check

Are you between 25 and 55 years old?
Do you have Down syndrome?
Are you generally in good health and not diagnosed with dementia?
Do you have someone reliable who can be your study partner?
Can you or a guardian agree to take part in the study?
Can you speak English or Spanish fluently?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part in this study, you would undergo several types of assessments over a period of time. This includes regular check-ups to assess your memory, thinking skills, and overall health. You would also have blood tests and other samples taken, as well as brain scans (MRI).

There are no new medications given as part of this study. Your current medications would be reviewed to make sure they are stable. The full duration of your participation will vary as the study's aim is to prepare for future trials, and some participants may be invited to join those. You will have a reliable study partner (like a family member or carer) who will help by providing information about you.

Potential risks and benefits

Taking part in this study could offer several benefits, such as contributing valuable information that helps researchers better understand Alzheimer's disease in people with Down syndrome, potentially leading to new treatments in the future. You will also have regular health assessments. As with any medical study, there are some potential risks, such as discomfort from blood tests or the time commitment required for appointments. MRI scans involve an enclosed space, which some people find uncomfortable, but they are generally safe. You have the right to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (22)

Barrow Neurological Institute
Phoenix, United States· Recruiting
University of California, Irvine School of Medicine, Co-Enrolling through ABC-DS Only
Orange, United States· Recruiting
Linda Crnic Institute for Down Syndrome, University of Colorado
Aurora, United States· Recruiting
Advocate Medical Group Adult Down Syndrome Center
Park Ridge, United States· Not yet recruiting
Indiana University
Indianapolis, United States· Recruiting
University of Kansas Medical Center
Kansas City, United States· Recruiting
University of Kentucky, Co-Enrolling through ABC-DS Only
Lexington, United States· Recruiting
Massachusetts General Hospital, Co-Enrolling through ABC-DS Only
Boston, United States· Recruiting
Washington University, St. Louis
St Louis, United States· Recruiting
Cleveland Clinic, Lou Ruvo Center for Brain Health, Las Vegas
Las Vegas, United States· Not yet recruiting
New York State Institute for Basic Research in Developmental Disabilities (SIBRDD), Co-Enrolling through ABC-DS Only
Staten Island, United States· Recruiting
Case Western Reserve University
Beachwood, United States· Recruiting

+10 more sites — see the official record for the full list.

Common questions

What is the main goal of this study?

The main goal is to understand how Alzheimer's disease develops in people with Down syndrome and to find better ways to measure these changes for future drug trials.

Who can join this study?

Adults with Down syndrome between 25 and 55 years old, who are in good general health and meet other specific requirements, can join.

Will I receive any new medication in this study?

No, this study does not involve giving new medications. It focuses on observation and assessment.

What does a 'study partner' do?

A study partner, like a family member or carer, helps by providing important information about your health and daily life to the research team.

Where can I find more information?

You can visit the study website at https://www.trcds.org/ for more details.

How to find out more

ATRI Recruitment Team

DS-participate@usc.edu 213-821-0569 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.