"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.

ABSTRACT:

Introduction

Over 220,000 people live with Down syndrome (DS) in the United States, with an average life expectancy of 63.5 years of age. The high risk for Alzheimer's disease (AD) in DS means studies must be accessible and inclusive. We share our experience of building a collaborative group of self-advocates and care partners to provide meaningful feedback on research.

Methods

Our research partnership group is supported by the Alzheimer's Clinical Trials Consortium-Down Syndrome (ACTC-DS) and Alzheimer's Biomarker Consortium Down Syndrome (ABC-DS). We synthesize feedback into themes and recommendations for researchers.

Results

Feedback themes are broad, extending from the strong motivation to engage in research to the need to balance study burden and risk. Recommenda

SUBMITTER: Walter S 

PROVIDER: S-EPMC12715699 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature