About Us

ABC-DS has a crucial mission: to spot the early signs of Alzheimer’s in adults with Down syndrome. This includes identifying sensitive neuropsychological measures of cognitive decline, blood-based proteins, metabolites and genetic biomarkers, along with neuropathological features. We aim to trace the journey from healthy aging to mild memory problems, and finally, to Alzheimer’s. Together, we’ll work to uncover hidden links that give us a fighting chance against Alzheimer’s disease.

Who is Behind ABC-DS?

ABC-DS is supported by four U.S.G. sponsors: National Institute on Aging (NIA), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), and INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE).

Our program partners include world-class research institutions: Cambridge University, Columbia University and the New York State Institute for Basic Research in Developmental Disabilities, Massachusetts General Hospital, University of California Irvine, University of Kentucky, University of Pittsburgh, University of Wisconsin-Madison, and Washington University in St. Louis to advance DS-AD research. The program also partners with community organizations nationwide including the National Down Syndrome Society.

Together, we are committed to making a difference in the Down syndrome community.

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Meet the Research Team

The ABC-DS study is a multi-PI study led by Drs. Ben Handen (University of Pittsburgh), Brad Christian (University of Wisconsin Madison), Elizabeth Head and Mark Mapstone (University of California, Irvine).

Ben Handen

M.Ed., Ph.D.
Professor of Psychiatry, Pediatrics,
Psychology and Instruction and Learning (Education)

University of Pittsburgh

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Brad Christian

Professor, Medical Physics and Psychiatry

University of Wisconsin-Madison

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Elizabeth Head

M.A., Ph.D.
Professor, Pathology
School of Medicine

University of California Irvine

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Mark Mapstone

M.A., Ph.D.
Professor, Neurology School of Medicine

University of California Irvine

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ABC-DS Study Accomplishments to-date:


Participants enrolled and counting


Research project requests


Scans (194 MRIs; 130 Tau PETs; 149 Amyloid PETs)



Frequently Asked Questions

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General Questions

Why is this study being done?

Alzheimer’s causes unwanted changes in the brain. These changes get worse over time and make it harder and harder for people to remember and do everyday things. Alzheimer’s can start in the brain many years before noticeable problems with memory or daily tasks.

People with Down syndrome who are middle-aged and older are significantly more likely to get Alzheimer’s compared with people of the same age who don’t have Down syndrome.

It’s vital we learn more so we can develop therapies with the goal of one day preventing Alzheimer’s in the first place. Our study is looking for things that predict which adults with Down syndrome are most likely to get Alzheimer’s. The discoveries from this research stand to benefit not only the Down syndrome community but all kinds of people who have, or might develop Alzheimer’s or other forms of dementia.

Who is eligible for this study?

If you’re already taking part in another Alzheimer’s and Down syndrome study, we thank you and ask that you continue your participation to help this important research.

If this is the first time you’ve considered volunteering for this kind of study, please see our eligibility criteria below:

  • Adults with Down syndrome who are at least 25 years old.
  • Both men and women, but not women who are pregnant or actively trying to get pregnant.

We are aiming to enroll 700 adults with Down syndrome along with 50 brothers or sisters of some of our volunteers.

What has this study found out so far?

This research has already made exciting progress thanks to volunteers like you. Click here to read our research news and discoveries.

Patient Questions

What is expected of me if I enter the study?

It’s your choice how much or how little you’d like to participate in this study. You can agree to do all parts of the study or just some of them. The parts of the study that are required are taking some thinking tests, some brain imaging and giving blood samples at each visit. Your study partner will answer questions about health history, behavior, and daily activities.


Can I find out my results from the study?

Most tests in this study are different from health tests you receive when you visit your health care provider. That’s why it’s not our routine practice to share results. Of course, if the study team happens to see something, just by chance, that could possibly affect your health or well-being, we can provide that information to your regular doctor.

Will I be paid for this study?

You will be paid for volunteering for this study, the amount you will be paid depends on the procedures you choose to complete. You will also be paid for any travel costs you incur from participating.

Where can I find out who to contact?

If you are a current participant, future participant, or caregiver, find a location and reach out via email.

Researcher Questions

How do I apply?
  • Fill out the Qualtrix request form.
  • Review and sign the ABC-DS Data Use Agreement
  • Your request will undergo committee review.
  • You will be notified once you are approved or if we require more information.
  • Once approved, you will have access to data from the study through LONI.
What type of data is available to me after I receive access?
  • All common core measures in the data dictionary from each data freeze should be available after you receive access.
What are common core measures being captured?
How long will it take for me to receive data?
  • The entire process will take between 4-6 weeks, but availability of data may be impacted because of data freeze timing.