ACTC-DS & ABC-DS Partnership Group
The ACTC-DS and ABC-DS Partnership Group brings together adults with Down syndrome, family care partners, and researchers who share a common goal: ensuring that Down syndrome and Alzheimer’s disease research reflects the needs, experiences, and priorities of the Down syndrome community.
Our partnership group is supported by two research programs. ACTC-DS stands for the Alzheimer’s Clinical Trials Consortium – Down Syndrome. It runs studies that test new treatments for Alzheimer’s disease. ABC-DS stands for the Alzheimer Biomarker Consortium – Down Syndrome. It follows adults with Down syndrome over many years to look for the earliest signs of Alzheimer’s. You can read more about ACTC-DS and ABC-DS.
At the heart of this group are self-advocates and families whose lived experiences help guide and strengthen research. Partnership Group members share their perspectives on what matters most to people with Down syndrome and their care partners, helping researchers design studies that are more accessible, meaningful, and relevant to the community they serve.
Our partnership group includes 7 adults with Down syndrome and 8 family members. The group is led by Sarah Walter together with 4 researchers: Mike Rafii, Lauren Ptomey, Anne Cohen, Liz Head and Kelly Loeb. Members represent diverse backgrounds and communities across the United States, bringing a wide range of experiences and voices to the conversation.
Partnership Group members play an active role in shaping Down syndrome and Alzheimer’s disease research. Their feedback has helped improve study materials, informed consent forms, recruitment approaches, and strategies to reduce participation burden and increase accessibility. Members have also co-authored a peer-reviewed publication on considerations for clinical trials involving adults with Down syndrome, helping to advance more inclusive and participant-centered research practices.
Our Advice for Researchers
- We need support and connection
Researchers can support all volunteers, even those who do not take part in studies. - We want to receive our research results
Sharing results helps us want to be involved and gives us important information about our brain health. - We need information explained to us
Take extra time to explain special words and how we will be supported and feel safe. - We need research to fit in our busy lives
Our jobs and activities are important to us! Free rides and studies from home will help. - We need respectful communication
Train research staff to speak directly to self-advocates. Write materials so we can understand our choices. - We need support during research
Offer breaks, activities, and talk about what bothers us, so we can be ready. - We want accessible, inclusive materials
Diverse pictures of people with Down syndrome shows that research is for everyone! - We want to stay connected
Stay in regular contact with self-advocates, families, and people that aren’t taking part in research. - We want a true partnership
Some self-advocates might want to work as research staff and study buddies, or partner in other ways.
Read the full paper: Walter S, Ptomey L, Head E, et al. “Being brave, being seen, and having your voice heard”: Perspectives of self-advocates and families toward accessible and impactful research of Alzheimer’s disease in Down syndrome. Alzheimer’s Dement. 2025;21(12):e70999. https://doi.org/10.1002/alz.70999
Most importantly, the Partnership Group ensures that people with Down syndrome and their families are not just participants in research, they are partners in it. Together, ACTC-DS and ABC-DS are working to advance research that supports healthy aging, improves quality of life, and reflects the voices of the community every step of the way.
Contact Sarah Walter (waltersa@usc.edu) if you have any questions or would like to learn more about our group!
“BEING BRAVE, BEING SEEN AND HAVING YOUR VOICE HEARD”
Feedback from self-advocates to improve Alzheimer’s research
Some people with Down syndrome have a lot of trouble remembering things. They find it very hard to talk or think clearly. This is called dementia.
The most common kind of dementia is Alzheimer’s disease. Most people with Down syndrome get Alzheimer’s when they grow old.
Researchers run studies about Alzheimer’s to learn how to treat it. We need more of these studies for people with Down syndrome.
We built a team to help researchers. People with Down syndrome are part of our team. Their families are too. Our team helps improve Alzheimer’s studies for people with Down syndrome.
Read the full briefing
Our community briefing explains this work in full. It covers what dementia is, why people with Down syndrome should help with research, and what you can do to help.
