Join more than 200 people like you driving breakthroughs
By partnering with us, you’re joining the fight against Alzheimer’s disease in the Down syndrome community.
What is ABC-DS?
The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) is a 5-year research project where we follow a group of adult volunteers with Down syndrome to find signs and risks of Alzheimer’s. As part of the study, we gather data through brain scans, blood tests, and exams that look at how people with Down syndrome think.
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What are Down Syndrome and Alzheimer’s Disease?
Down syndrome is a genetic condition caused by an extra copy of chromosome 21. It affects a person’s physical and intellectual development.
Alzheimer’s is the most common type of dementia that affects a person’s memory, thinking, and behavior. Alzheimer’s worsens over time, yet changes in the brain caused by Alzheimer’s happen many years before symptoms emerge.
Why study Alzheimer’s Disease in Down Syndrome?
Did you know that 70% of adults with Down syndrome will develop Alzheimer’s at some point in their life? Virtually all people with Down syndrome have brain changes consistent with Alzheimer’s by age 40. This needs to change. The only way to change these odds is to better understand, diagnose, treat, and prevent Alzheimer’s in the Down syndrome community.
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The Participation Process
Visit one of our research sites for a general medical exam, complete puzzles and games, questionnaires for your study partner, take photos of your brain and give blood samples.
You will return to see us at 16, 32 and 48 months and then at some point later for a similar visit.
Learn How to Volunteer
Study enrollment and consent
Complete visits to one of our research sites
Study partner completes questionnaires at each visit
Return at 16, 32 and 48 months later for a similar visit.
Tools for Researchers
The ABC-DS study welcomes manuscripts, papers, abstracts, and presentations based on study data and materials. Click here to learn more about the data request process.
More Info for Research
ABC-DS News & Publications
Read More News & PublicationsWoman Donated Her Brain to Science—Alzheimer’s Experts Shocked by Discovery
An ABC-DS participant at the University of California - Irvine donated her brain upon passing away in her 60s. Brain donation is incredibly important to our work, and this case is a great example. The participant’s brain had all of the neuropathological markers expected with a diagnosis of Alzheimer’s disease. Even with all of the hallmark neurological signs of Alzheimer’s, this participant was cognitively stable her entire life! This woman defied the odds and by donating her brain has given us the opportunity to learn more about protective factors. Check out the article to learn more.
Read MoreWho Really Discovered the Cause of Down Syndrome?
In 1959 the first findings of a genetic cause of Down syndrome were published. French scientist Jérôme Lejeune has long been credited for the discovery of trisomy 21. Many years later, Marthe Gautier, made it clear that she was the true discoverer of trisomy 21. The article, “Who Discovered the Cause of Down Syndrome”, describes how Gautier had the ability to culture cells to find this breakthrough discovery. The article goes on to describe how Lejeune had access to photograph the results of Gautier’s study. Instead of just photographing them, he took the photographs to their superior and quickly published the results as the first author with Gautier as the second author (and with her name misspelled). For many years, Lejeune was the face of the discovery of trisomy 21, until Gautier herself advocated to be recognized as the true discoverer. As we open Women’s History Month and approach World Down Syndrome Day on March 21, we want to celebrate Marthe Gautier and her incredible discovery. Click 'Read More' below to read the entire article!
Read MoreNew Newsletter from the University of Cambridge!
Our team from the University of Cambridge has a new newsletter to share with you!
Read MoreNew Lifestyle Newsletter!
Check out our newest Lifestyle newsletter! This edition is all about the importance of sleep and how you can improve your sleep.
Read MoreZoom Caregiver Support Group: Down’s Syndrome & Dementia
Build a support system with people who understand via a Caregiver Support Group for caregivers of those caring for someone with Down Syndrome and Dementia/Alzheimer's Disease.
Read MoreJanuary Healthy Diet Resources
Information from our ABC-DS calendar for the month of January the theme is HEALTHY DIET
Read MoreDoes Employment Complexity Promote Healthy Cognitive Aging in Down Syndrome?
In adults with Down syndrome, lower employment complexity is associated with memory decline and symptoms of Alzheimer’s disease.
Read MoreLa Movida Madison
Our University of Wisconsin-Madison Study ABC-DS study team joined La Movida Madison
Read MoreComparison of amyloid burden in individuals with Down syndrome versus autosomal dominant Alzheimer’s disease: a cross-sectional study
Amyloid PET changes were similar between people with autosomal dominant Alzheimer's disease versus Down syndrome
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