The Dementia Datahub: Building a Long-term Surveillance Infrastructure to Support Transdisciplinary Research and Stakeholder Collaboration

Disease surveillance is a core function of public health. It allows us to understand the distribution of disease, monitor disparities between groups, and track progress on prevention and treatment objectives. Without timely surveillance data, it can be difficult to plan for the allocation of scarce resources or the development of services. In 2024, NORC and our partners launched the Dementia Datahub (https://dementiadatahub.org). This online, interactive surveillance visualization tool includes maps and dashboards that provide estimates of diagnosed Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) in the United States at the national, state, and county levels. We propose to sustain and expand the Dementia DataHub as part of the National Institute on Aging’s (NIA) infrastructure until 2030, providing open, fair, and democratized surveillance data on dementia through four specific aims: Maintain and enhance the existing system to provide surveillance data for diagnosed AD/ADRD through 2028; add new outcome data, new contextual data, and new visualizations; and publish ongoing validation research and systems reports. Estimate the prevalence of persons living with dementia (diagnosed and undiagnosed) using small area estimation methods and nationally representative data sources. These new estimates will allow DataHub users to examine the underlying prevalence of AD/ADRD across geographies, regardless of whether they are diagnosed in the Medicare system. Support early-career and nontraditional researchers in conducting dementia epidemiological research via pilot grants and technical support that remove financial, administrative, and technical barriers to using complex data. This mechanism will expand the scope of who can contribute to research on important questions. Engage experts for system guidance and prioritization by convening an advisory board of end users and experts to provide guidance on annual priorities and ensure that the system has the data that are most important to end users. We will also conduct dissemination activities to promote the Dementia Datahub so that the system is known and used correctly. Public health, healthcare policy, and health systems have grown more dependent on tech-savvy, information-driven surveillance data pipelines to drive decision-making. A centralized, annually updated, and sustained surveillance system of AD/ADRD data is critically needed, particularly given the monumental, ongoing changes in disease understanding, diagnostics, treatment, and care models around dementia. Our proposed work meets this need by transforming an existing NIA R01-funded surveillance project into a sustainable long-term component of the NIA infrastructure.