The Alliance for Aging Research, LuMind IDSC, and the National Down Syndrome Society 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.
LEARN TO NAVIGATE RESEARCH OPPORTUNITIES & EVALUATE RESEARCH OUTCOMES
Adults with Down syndrome and/or family caregivers are invited to become Research Advocates with this five-session, online course in Patient-Centered Outcomes Research! The Pathways to Parity program empowers adults and caregivers to accelerate and improve healthcare research in the aging population. This course is being offered for adults with Down syndrome and/or family caregivers to become well-versed in Patient-Centered Outcomes Research (PCOR) and learn how to understand and evaluate research opportunities related to Down syndrome and Alzheimer’s disease.
PCOR educates patient advocates and their family caregivers on clinical research related to Alzheimer’s disease for better collaboration with physicians and researchers so that patients and their family caregivers can make better informed decisions about their healthcare.
This Pathways to Parity Training Program was funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-34739). This program is a collaboration between the Alliance for Aging Research, LuMind IDSC, and the National Down Syndrome Society (NDSS).
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 five times in May 2025 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:
The Alliance for Aging Research, NDSS, and LuMind IDSC 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:
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 2025 course includes:
Isabel Barroeta, M.D., Ph.D
Neurologist, Memory Unit at the Hospital de la Santa Creu i 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
Schedule
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?
INFORMATION WEBINAR and QUESTION SESSION
Join an upcoming webinar with the course organizers to learn more and ask questions about the process!
WEDNESDAY, DECEMBER 4 at 12 noon, ET
To register for the webinar, please contact Beth via email: [email protected]
