Research should be conducted with us, not on us: Perspectives on Alzheimer's disease clinical trials for persons with Down syndrome

Abstract Life expectancy for individuals with Down syndrome (DS) has increased significantly over the past 60 years, drawing greater attention to Alzheimer's disease (AD), now the leading cause of death in this population. Despite a lifetime AD risk as high as 90%, individuals with DS have been historically excluded from AD research, exacerbating already‐existing significant gaps in prevention, diagnosis, and treatment strategies. Although recent clinical trials have begun to address this, challenges in recruitment and retention persist due to accessibility barriers, safety concerns, and limited prior engagement. Meaningful inclusion requires centering the voices of both individuals with DS and their caregivers to ensure that researchers provide accessible studies, communicate with respect, and share results, which will result in greater trust in research. This perspective offers personal reflections from an adult with DS, her caregiver, and two researchers, offering practical insights for designing inclusive, respectful, and person‐centered clinical trials. By age 65, Alzheimer's disease (AD) affects > 90% of adults with Down syndrome (DS). Individuals with DS want to be included in AD clinical trials. Families ask for shorter visits, kind staff, and clear return of results. Individuals with DS want to be treated as people, not just as research subjects.