Establishing the foundation for a national AD/ADRD registry

Summary This supplement will establish the foundation for a national AD/ADRD registry: a comprehensive, population-based, source of information about Americans on the AD/ADRD disease spectrum. Building on the framework outlined in the Obama Administration's comprehensive plan to fight Alzheimer's disease; state disease registries in Georgia, South Carolina, and West Virginia; the NIH-sponsored SEER-Medicare Linked Database; and other AD/ADRD data aggregation efforts, we propose to investigate the feasibility of a national AD/ADRD registry that can be used for treatment, research, and policy planning purposes. In a two-part series we will convene a network of policy makers, practitioners, researchers, and advocates to blueprint registry goals, eligibility and inclusion criteria, content, and linkages to supplemental data sources. Co-moderated by representatives from the USC Schaeffer Center for Health Policy & Economics and the National Institute on Aging Behavioral and Social Research division, the two convenings will be designed to address issues surrounding practically, legality, and effectiveness. In recognition that this convening is the first of many steps needed to execute on findings, our network will produce a summary document detailing recommendations, barriers, and next steps towards the development of a national AD/ADRD registry. 1

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