Here is a list of the studies in which we are actively recruiting for individuals with Down syndrome. For more information about a specific study, contact the Study Coordinator for that study.
Middle-aged and older adults with Down syndrome are more likely to develop Alzheimer’s Disease (AD) than other, similarly aged adults. People with AD have changes in their brains that, very slowly over time, make it difficult to remember and do things that are a part of everyday life. In AD, these changes can start in the brain many years before any problems with memory and functioning begin, but once they start, they can get worse and worse as time goes on.
The purpose of this research study is to identify those things that can predict which adults with Down syndrome are most likely to develop AD. This is very important, because it could help us develop new therapies or give us an idea of how to prevent or slow AD in adults with Down syndrome. The information we learn could also be very helpful for everyone (not just adults with Down syndrome) at risk for developing dementia.
- Participants: Adults with Down syndrome at least 25 years of age.
- Must have a “Study Partner” who is able and willing to provide information for Participant about medical status and abilities
- Follow up for 5-6 years
- Memory Testing
- Blood Samples
- Brain Imaging: MRI and PET
- Lumbar Puncture (Optional)
Contact Brittany Nelson @ 314-747-8425 for more information.
This study was designed to be flexible and participant-centered, allowing individuals with Down syndrome to choose the activities they’re most comfortable with or interested in. Whether or not you’ve participated in other studies, you can take part in as much or as little as you like—it’s entirely up to you.
- Participants: Individuals with Down syndrome who are 18 years and older
- Must have a “Study Partner” who is able and willing to provide information for Participant about medical status and abilities
- Questionnaires
- Minimal Cognitive Testing
- Blood Work
- Stool Sample
- Activity Monitoring
- At Home Sleep Study
- Lumbar Puncture
- Eye Exam
Enrolling Sibling and Parent controls who are at least 18 years of age.
Contact Brittany Nelson @ 314-747-8425 for more information.
This study was designed to be flexible and participant-centered, allowing individuals with Down syndrome to choose the activities they’re most comfortable with or interested in. Whether or not you’ve participated in other studies, you can take part in as much or as little as you like—it’s entirely up to you!
- Participants: Individuals with Down syndrome who are 5-17 years old
- Must have a Parent/Legal Guardian as “Study Partner” who is able and willing to provide information for Participant about medical status and abilities
- Questionnaires
- Minimal Cognitive Testing
- Blood Work
- Stool Sample
- Activity Monitoring
- At home sleep study
Enrolling Sibling and Parent controls who are 5-60 years old.
Contact Brittany Nelson @ 314-747-8425 for more information.
The overall goal of the study is to understand if difference in lifestyle effect aging and risk and timing of Alzheimer’s disease in Down syndrome. The study is focused on four aspects of lifestyle – physical activity, sleep, cognitive stimulation (or activities requiring concentration and thinking), and social interactions. We want to know if differences in these lifestyle factors are related to differences in cognitive functioning and brain changes associated with Alzheimer’s disease. Our long-term goal for this research is find ways to potentially change lifestyle to improve aging experiences in Down syndrome.
- Caregiver Questionnaires
- Participant and Caregiver 7-day diary about daily activities and sleep quality
- 3 Study sessions
- Actigraphy – a device you wear, that tells us how much you moved around that day and how much you slept
- Oxygen Monitoring
- Must be enrolled in the ABC-DS study to participate
Contact Brittany Nelson @ 314-747-8425 for more information.
The purpose of this research study is to identify biological and behavioral markers—such as blood, stool, sleep, activity, and questionnaire data—that help us understand risk and protective factors in individuals with Down syndrome (DS) compared to those without. The ultimate goal is to develop a digital cognitive assessment that is sensitive to Alzheimer’s disease (AD) biomarkers and clinical progression in individuals with DS-associated AD.
- Participants: Individuals with Down syndrome who are 30-60 years old
- Study Partner Questionnaires – Phone or In-person
- Cognitive Assessments
- Clinical Exams
- Blood Samples
- Remote Cognitive Assessments – via Smartphone – Every 6 months
- Follow up Assessments – Annually
Contact Brittany Nelson @ 314-747-8425 for more information.
Alzheimer’s disease (AD) is a common problem in older adults with Down syndrome. More than half of all people with Down syndrome develop AD. People with AD have changes in their brains that make it difficult to remember and do things that are a part of everyday life. AD gets worse as time goes on.
In AD, changes can start in the brain 15-20 years before the problems with memory and functioning (ability to do everyday things) begin. If we can tell if someone is at risk – before changes in the brain cause problems – we might be able to help prevent AD or make the problems less severe. Right now, we do not know if someone has AD until the problems start to show.
AD researchers are very interested in learning more about adults with Down syndrome. Everyone with Down syndrome has an extra 21st chromosome. This chromosome tells the body to make a protein (called amyloid protein). We think that making too much of this protein may cause changes in the brain. Because people with Down syndrome have an extra 21st chromosome, their bodies may be making extra amyloid protein and are more likely to get AD. Therefore, people with Down syndrome have an important role to play in helping researchers understand AD. The primary aim of TRC-DS study is to follow participants who would be eligible to support future enrollment into primary Alzheimer Disease (AD) prevention trials for adults with DS.
- Participants: Adults with Down syndrome aged 25-55 years or older
- Follow up for 2 years
- 3 In-person visits and 2 Phone visits
- Brain Imaging: MRI and PET
- Bloodwork
- Memory Testing
- Lumbar Puncture (Optional)
Down syndrome Clinical Trials
What is the ABATE Study?
The ABATE Study is a research study testing a possible new treatment for Alzheimer’s disease in people with Down syndrome.
People with Down syndrome are more likely to develop Alzheimer’s disease, which is a brain disease that affects memory and thinking. The ABATE Study is testing a study medicine called ACI-24.060 to see if it can help slow down these problems.
Why is this study important?
This study has two main goals:
- To find out if the study medicine is safe for people with Down syndrome.
- To see if it can slow down memory loss and thinking problems that come with Alzheimer’s disease.
What happens in the study?
- Participants will be randomly assigned to receive either the study medicine (ACI-24.060) or a placebo (a treatment that has no active ingredients).
- Neither participants nor the study team will know which treatment is being given—this helps make the results fair and reliable.
- The study includes medical check-ups, memory tests, and other procedures to help researchers understand how the treatment is working.
What does it cost?
There is no cost to join the study. All treatments, tests, and doctor visits are provided free of charge. Participants may also receive help with travel and meal costs during study visits.
You may qualify if:
- You have Down syndrome.
- You are 35–50 years old.
- You have a close friend or family member who can come with you to study visits.
Contact Brittany Nelson @ 314-747-8425 for more information.
What is the HERO Study?
The HERO study is a clinical research study for adults with Down syndrome. Some people with Down syndrome may develop Alzheimer’s disease as they get older. Alzheimer’s is a brain disease that makes it harder to think, learn, and remember things.
Researchers are studying a new medicine called ION269 to see if it is safe and well-tolerated. They also want to learn whether it might help slow down or prevent Alzheimer’s disease in people with Down syndrome.
Why is this study important?
There are currently no approved treatments to prevent Alzheimer’s disease in people with Down syndrome. This study could help researchers find new ways to protect brain health and support memory and thinking in the future.
What happens in the HERO study?
- During the HERO study, doctors and scientists will give the study medicine to Study Participants. This will happen at a study clinic (usually a hospital or doctor’s office).
- The study medicine is a liquid. It gets injected into the lower back once during the study. This might hurt a little.
- During the HERO study, Study Participants will get health checks. Health checks are to help the study doctor learn about the study medicine and whether it is safe.
You may qualify if:
- You have Down syndrome.
- You are 35–55 years old.
- You have a close friend or family member who can come with you to study visits.
Contact Brittany Nelson @ 314-747-8425 for more information.