The Alliance for Aging Research and the National Down Syndrome Society (NDSS) invite adults with Down syndrome and/or their caregivers to learn more about Alzheimer’s disease, clinical research, and how it impacts people with Down syndrome in our Patient-Centered Outcomes Research (PCOR) program entitled Pathways to Parity.
What will I learn?
Participation includes 10-hours of online workshops, ongoing access to a network of other advocates trained in clinical research, and a mentoring program. Participants will meet virtually on Zoom six times in May 2026 to learn from researchers in the field. Participants will also complete assignments and have opportunities to collaborate online with each other.
During the course, you will learn:
- What clinical research is – how it works and how it is relevant to you
- The purpose of, and best practices in, engaging in research
- How to develop Alzheimer’s disease-related research questions that are meaningful to adults with Down syndrome and caregivers
- Key scientific tools and concepts to better understand health research
Who should take this course?
The Alliance for Aging Research and NDSS value diverse voices and strive to be a place where inclusion lives. We encourage adults with Down syndrome and family caregivers of adults with Down syndrome to apply, including those of any race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status.
We are looking for adults or family caregivers who:
- Are excited to learn about how individuals with Down syndrome and family caregivers can engage in the research process. NO prior knowledge or expertise is required! Curriculum modifications are available for individuals with Down syndrome who choose to participate.
- Can participate in six 2-hour online sessions. You do NOT need to be tech savvy; we will walk you through every step of the online process.
- Will complete homework prior to each session. Expect 5-6 hours of homework in total. NO grading, we promise!
Who is teaching the course?
The course will be led by a team of outstanding experts in the fields of Alzheimer’s disease research and care, who also have extensive experience working with adults with Down syndrome. Each “researcher teacher” will present to the wider class and will lead a smaller group in directed discussions.
Our team for Spring 2026 course includes:
Isabel Barroeta, M.D., Ph.D
Neurologist, Memory Unit at the Hospital de la Santa Creu in Sant Pau, Barcelona, Spain
Ann Cohen, Ph.D.
Tenured Associate Professor of Psychiatry at the University of Pittsburgh School of Medicine
Sigan Hartley, Ph.D.
Professor of Human Development and Family Studies and 100 Women Distinguished Chair of Human Ecology at the University of Wisconsin-Madison
Elizabeth Head, M.D.
Professor and Vice Chair of Research in the Department of Pathology and Laboratory Medicine at the University of California Irvine
Michael Rafii M.D., Ph.D.
Medical Director of the Alzheimer’s Therapeutic Research Institute and Professor of Clinical Neurology at the Keck School of Medicine of the University of Southern California
Course Details
Schedule
- Session One: Thursday, May 7, 12 12:00 - 1:30 PM ET
- Session Two: Thursday, May 14, 12 12:00 - 2:00 PM ET
- Session Three: Tuesday, May 19, 12 12:00 - 2:00 PM ET
- Session Four: Thursday, May 21, 12 12:00 - 2:00 PM ET
- Session Five: Tuesday, May 26, 12 12:00 - 2:00 PM ET
- Session Six: Thursday, May 28, 12 12:00 - 2:00 PM ET
Compensation
Participants who successfully complete the workshop will receive a stipend of $850. As alumni, our participants will have access to 150 people also trained on clinical research (some in dementia, some in other fields such as cardiology), be included in any webinars and additional trainings we provide for other course alumna, and receive our assistance with letters of recommendation and other shared information for opportunities in research, policy, and health education centered on improving outcomes in research and patient care.
How do I register? What should I do if I have questions?
The first step is to let us know you are interested! Please complete this short form, which also includes a section for questions.
After you complete the form, you’ll receive an email inviting you to a quick phone call with Beth Mathews-Bradshaw from Alliance for Aging Research. Keep a lookout for Beth’s message!
Beth will arrange a call and can answer questions at that time. The calls with Beth are informal and are intended to ensure this training fits your needs.