Down Syndrome Cohort
Study overview: The Down syndrome Cohort study is a long-term, observational study. The goal of the Down syndrome Cohort study is to follow a group of participants with Down syndrome over time to learn more about brain health related to aging. This study collects a broad range of detailed information from each participant to support further research on individuals with Down syndrome in relation to aging, cognition, dementia, and Alzheimer’s Disease.
Who can participate? Adults with Down syndrome who are 18 years old or older and have a study partner who is able to attend study visits with the participant.
What are the study procedures? There are three visits within three months and some visits can be combined
- Clinical Evaluation to collect health history, family history, questionaries, brief non-invasive physical and neuro exam, vitals
- Fasting Laboratory Blood Draw
- Memory and Thinking Evaluation
How long is participation? This is a long-term longitudinal study.
How many visits are there? Three visits every 16 months
Is there compensation? Yes
Why is this research being done? The purpose of this study is to learn more about people who have Down syndrome and their brain health. The information collected will help to contribute to local, regional, and national research studies.
Down Syndrome Cohort Study Flyer
Trial Ready Cohort - Down Syndrome
Study overview: The Trial Ready Cohort-Down Syndrome or TRC-DS matches adults with Down syndrome to Alzheimer’s disease clinical trials designed specifically for people with Down syndrome. Volunteers will become a part of a community of clinical trial volunteers who can help to find a cure for Alzheimer’s disease.
Who can participate? Adults with Down syndrome who are between the ages of 25-55 and have no memory impairment.
What are the study procedures?
- Screening
- Blood draws, MRI and PET scans, questionnaires, and a cognitive assessment.
- Baseline
- Questionnaires, cognitive assessment, blood draw, PET, and optional lumbar puncture
- 16 – Month Follow Up
- Questionnaires, cognitive assessment, blood draw, MRI and PET, and optional lumbar puncture
How long is participation? Every 16 months until the participant is matched with an Alzheimer’s disease clinical trial.
How many visits are there? Initial screening and baseline visits followed by a regular visit every 16 months until enrollment in a clinical trial.
Is there compensation? Yes
Why is this research being done? Alzheimer’s disease occurs more frequently in people with Down syndrome because they have an extra copy of chromosome 21. As many as 9 in 10 people with Down syndrome develop Alzheimer’s disease. Through routine screenings, researchers can fast-track TRC-DS volunteers for enrollment in qualifying clinical studies in hope of finding a cure for Alzheimer’s disease in people with Down syndrome.
Trial Ready Cohort - DS Study Flyer
Brain Outcomes and Lifestyle in Down Syndrome (BOLD)
Study overview: The BOLD study is a two-visit observational study. The goal of this study is to learn more about how diet impacts brain health among those with Down syndrome. This study collects a broad range of detailed information from each participant to support further research on individuals with Down syndrome in relation to aging, cognition, dementia, and Alzheimer’s Disease.
Who can participate? Adults with Down syndrome who are 18 years old or older, have a BMI of 25 or greater and have a study partner who is able to attend study visits with the participant.
What are the study procedures? There are up to three study visits over one month period and some visits can be combined, the visits will involve the following:
- Fasting Laboratory Blood Draw
- Memory and Thinking Evaluation
- Evaluation of Diet, Physical activity, and weight
- MRI
- Caregiver questionnaires
How long is participation? Up to one month
How many visits are there? Two in-person and one remote visit in a one-month period
Is there compensation? Yes
Why is this research being done? The purpose of this study is to conduct an initial evaluation of the impact of weight loss and diet quality on factors that may delay the development of Alzheimer’s disease in adults with Down syndrome.
SPARTANS
Study overview: SPARTANS will collect physical activity measures to help find better ways to measure movement in adults with Down syndrome. Volunteers will be asked to attend one study visit that lasts about two hours.
Who can participate? Adults with Down syndrome who are 18 years or older.
What are the study procedures? Height, weight, measurement of movement intensity through preforming everyday household activities and exercise.
How long is participation? Single visit lasting about 2 hours.
How many visits are there? One visit.
Is there compensation? Yes
Why is this research being done? The University of Kansas Alzheimer’s Disease Research Center is wanting to find better ways to measure movement in adults with Down syndrome while they do everyday activities.
ABATE
Study overview: People with Down syndrome often develop Alzheimer’s disease as they get older. The ABATE study is a clinical trial testing an investigational vaccine to see if it slows the progression in individuals with Down syndrome.
We want to see:
- If the vaccine is safe
- How the vaccine works inside the body
- If it helps get rid of amyloid buildup
- If it slows down memory loss and thinking problems
Who can participate? Cognitively Normal (CN) group: individuals with no apparent memory problems.
What are the study procedures? Procedures include questionnaires, cognitive testing, ECG, MRI scans, PET scans, blood draws, and optional lumbar punctures.
How long is participation? Approx 2 Years (106 weeks)
How many visits are there? Approx 20 visits (some visits may be broken up into more or combined into less.)
Is there compensation? Yes
Why is this research being done? Individuals with Down syndrome often get Alzheimer’s disease when they get older. Alzheimer’s disease occurs when a protein called amyloid builds up in the brain. Right now, there is no treatment available for Alzheimer’s disease in individuals with Down syndrome. The ABATE study wants to test an investigational vaccine to see if it slows down memory loss and thinking problems.
