Down Syndrome
Learn about our Brain Health in Down Syndrome program.
Our Mission
Alzheimer’s disease impacts close to 90% of people with Down syndrome, with the average age of diagnosis around 50 years of age. The University of Kansas Alzheimer's Disease Research Center launched the Brain Health in Down Syndrome Program to drive efforts to prevent or delay Alzheimer's disease in individuals with Down syndrome.
The link between Alzheimer's and Down syndrome
People with Down syndrome are born with an extra copy of chromosome 21, which carries a gene that produces a specific protein called amyloid precursor protein (APP). Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. The presence of beta-amyloid plaques is one of the hallmarks of Alzheimer's disease. By age 40, most people with Down syndrome have these plaques, along with other protein deposits, called tau tangles, which cause problems with how brain cells function and increase the risk of developing Alzheimer’s symptoms.
The KU ADRC’s is working hard to understand why some people with Down syndrome develop memory changes related to Alzheimer’s while others do not. We also want to explore what drugs or other treatments, like what we eat and how much we move, work to delay or even prevent the disease process.
Be a research hero!
We need individuals with Down syndrome to join our research studies to help us gain insights, reduce risks, and improve lives. Be part of the progress to prevent Alzheimer's disease in people with Down syndrome.
Take the First Step
Make a difference. Become a research hero.
Call 913.588.0555 to talk with our team about research opportunities
Studies dedicated to people with Down syndrome
Alzheimer Biomarker Consortium - Down Syndrome (ABC-DS)
Study overview: Active involvement in this observational study empowers individuals with Down syndrome to play a pivotal role in uncovering who is more likely to develop Alzheimer’s disease. We are optimistic that the findings from this study will drive progress in developing treatments and potentially slowing the progression of Alzheimer’s’ disease.
Who can participate? Adults with Down syndrome who are 25 years or older.
What are the study procedures? The following procedures could be performed depending on the study visit: blood draws, MRI and PET scans, questionnaires and a cognitive assessment.
How long is participation? Visits every 16 months for a total of four visits, over approximately five years.
How many visits are there? A total of four different study visits can be completed over the course of 1-3 days.
Is there compensation? Yes
Why is this research being done? Alzheimer's disease is notably prevalent among individuals with Down syndrome, affecting 9 out of 10 people. This study aims to investigate why certain individuals are more predisposed to developing Alzheimer's disease than others. These insights hold the potential to pave the way for future treatments targeting Alzheimer's disease.
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 performing 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 wants 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? Approximately 2 Years (106 weeks)
How many visits are there? Approximately 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.
Brain Outcomes and Lifestyle in Down syndrome (BOLD)
Study overview: Adults with Down syndrome (DS) will either follow a weight loss program or get information about how to improve their overall health. The study is 12 months long and includes monthly virtual meetings and up to 5 visits to the University of Kansas Medical Center. There is no cost to join the study and participants will be compensated for their participation.
Who can participate? Adults with Down syndrome 18-64, specifically:
- BMI 25 to 45kg/m2
- Ability to communicate through spoken language
- Have a caregiver who routinely interacts with the person with Down Syndrome and is willing to attend the study visits
- Willing to travel to KUMC facilities for study assessments
What are the study procedures? Blood draw, cognitive testing, anthropometrics, MRI, dietary intake.
How long is participation? 12 months
How many visits are there? Up to five (5) visits at KUMC.
Is there compensation? Yes
Why is this research being done? We are looking for adults with Down syndrome (18-64) to join a research study to help us learn how changing what someone eats and what they weigh impacts their risk of developing Alzheimer's disease.
MyAlliance
My Alliance for Brain Health is a FREE program that provides regular tips, newsletters, webinars, and resources for everyone interested in brain health, Down syndrome and Alzheimer’s prevention, as well as for caregivers or anyone with memory concerns.
KU V-FIT Program
Virtual group fitness program for adolescents and adults with intellectual and developmental disabilities.
Program details:
- Created for adolescents and adults with an intellectual and developmental disability ages 13+
- Weekly 35 minute classes
- Types of exercise: Aerobic, Strength, Endurance, Dance based
- Classes taught over the free video conferencing application Zoom®
- Group format to promote social interaction
- Current class times are Monday 4:30-5:05pm and Thursday 5:00-5:35pm
Payment plans (select option to pay):
- Monthly unlimited membership $20
- Sign up by the 25th of the month for the next month.
- Per class $6
- Sign up 24 hours in advance (1 full business day)
Technology Requirements:
- Wifi connection
- Computer or tablet device with video conferencing capability (camera and microphone)
- Download free Zoom® video conferencing application
- Email address to send Zoom® link and to answer questionnaires
For questions and more information:
- Contact: Jessie at jdanon@kumc.edu or 785-764-3574
Being Proactive
Managing Alzheimer’s Risk in Individuals with Intellectual/Developmental Disabilities (IDD) is a program offered on demand by KU Alzheimer's Disease Research Center and local partners. It offers families and professionals that support someone with IDD information about exploring risk factors, ways to monitor for cognitive changes and ways to support.
Registration Link for Families
Caregiver Support Services
We offer support services where you can talk social worker or care navigator about your or your loved one's memory changes or dementia diagnosis. If you are interested, please contact Amy Yeager at 913-945-7663 or ayeager3@kumc.edu
Additional Resources
KU Medical Center Resources for Adults with Down Syndrome
National Task Group Information on Down Syndrome and Dementia
NIH Information about Alzheimer's Disease in People with Down Syndrome
CDC Information about Down Syndrome and Increased Risk for Alzheimer's Disease
Alzheimer's Association Information about Down Syndrome
Our Community Partners
Explore common study procedures
Study visits and procedures resources