Alzheimer's Disease Research Center Down Syndrome Cores: Experience from two sites

Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD). As individuals with DS live longer, the prevalence of AD-related dementia increases, underscoring a growing public health concern. Historically, research efforts have largely overlooked the early manifestations and neuropathological trajectory of AD in DS, limiting our understanding of how closely it mirrors or diverges from sporadic AD in the general population. The Alzheimer's Disease Research Center (ADRC) network, supported by the National Institute on Aging (NIA), plays a critical role in addressing this gap. This paper highlights the experiences of two ADRCs-University of California, Irvine (UCI) and University of Kansas Medical Center (KU) in developing dedicated research cores focused on aging and AD in individuals with DS. We describe cohort characteristics, outcome measures, major scientific contributions, and the challenges and opportunities that have emerged in this specialized area of research. HIGHLIGHTS: Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD). People with DS benefit from inclusion into the Alzheimer's Disease Research Center (ADRC) network. Clinical, cognitive, neuroimaging, and fluid biomarkers research inclusive of people with DS is feasible and encouraged. This review highlights the research of two sites and lessons learned from including people with DS in the ADRC ecosystem.