“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. Recommendations for researchers include providing support and connection to resources, sharing individual and study-level results, flexibility, and respectful communication. DISCUSSION: Our collaborative approach will lead to more relevant and accessible research studies. Highlights: Inclusive and accessible research is needed for Down syndrome and Alzheimer's disease. We built a collaborative group of self-advocates and care partners to provide feedback. Feedback includes a strong motivation to learn about brain health and engage in research. Respectful communication includes representative images and tailored materials. Recommendations include the choice to learn individual results, flexibility, and support.