(July 15th 2025) The Trial Ready Cohort for Down syndrome (TRC-DS) study will be based at the National Intellectual Disability Memory Service in TUH. The service will be inviting adults with Down syndrome who want to help researchers learn more about memory and thinking problems, such as Alzheimer’s disease.
This project is part of an international collaboration to improve care and outcomes for people with Down syndrome worldwide and is funded by the US National Institutes of Health, and sponsored by the Alzheimer’s Therapeutic Research Institute at the University of Southern California.
Participation in the study in Ireland will be led by Professor Seán Kennelly, and his colleagues in the National Intellectual Disability Memory Service. It will follow participants aged 25 to 55 for almost three years (which will involve seven visits to the National ID Memory Clinic), including regular check-ups such as memory tests, blood tests, and brain scans (MRI). The goal is to understand how and why changes happen in the brain so that new treatments or ways to prevent dementia in people with Down syndrome can be developed.
Another important aim of the study is to establish a trial-ready cohort for rapid enrolment in future Alzheimer’s clinical trials, ensuring that adults with Down syndrome have the opportunity to participate in these important studies.
Commenting on the participation in the study, Professor Seán Kennelly, Study Principle investigator & Clinical Director of National Intellectual Disability Memory Service at TUH said: “This landmark study represents a vital step forward in understanding how Alzheimer’s disease develops in people with Down syndrome. At the National Intellectual Disability Memory Service in TUH, we are proud to be part of an international effort that places people with intellectual disability at the forefront of brain health research. It is our hope that this work will not only accelerate future treatments but also ensure that people with Down syndrome are included in the breakthroughs to come.”
People with Down syndrome are at higher risk because they have an extra copy of chromosome 21, which causes the body to produce more amyloid protein. This protein can build up in the brain, forming plaques and tangles that damage brain cells over time. In AD, changes can start in the brain 15 to 20 years before any symptoms, such as changes in memory and the ability to do daily activities, appear. Many adults with Down syndrome begin to show changes related to Alzheimer’s between the ages of 25 and 55.
Diagnosing Alzheimer’s disease is not always easy. That is why it is helpful to have early memory checks when someone is younger and feeling well, doctors will have something to compare to later, if needed. For people with Down syndrome, this is especially important. That is why it is important they are included in research and clinical trials.
Participation in the study is voluntary and there is no cost to take part. To be eligible to join the study participants must:
- Be healthy people between the ages of 25 to 55 with Down syndrome
- Have an interest in supporting clinical research
- Be prepared to visit the National Intellectual Disability Memory Service in TUH once every 16 months for physical exams like blood pressure checks, blood tests, MRI scans and memory skills tests to measure changes in their brain health and function
*The four sites in Europe include the University of Cambridge, UK; Sant Pau Medical Research Institute in Spain; Institut Jérôme Lejeune, Paris and the Institute of Memory & Cognition in TUH.
