Data Core - The State Alzheimer's Research Support Center (StARS)

Revised Project Summary/Abstract-Data Core State policymakers have made large investments in programs to support people with Alzheimer’s disease and Alzheimer’s disease-related dementia (AD/ADRD) and their caregivers, but the effects of these investments on AD/ADRD programs and outcomes are largely unknown. Much of the data needed to conduct these evaluations are siloed and restricted across agencies and platforms due to complex issues of data privacy and linkage. States do not necessarily have the technical expertise and computing resources to overcome these challenges, and researchers outside of state governments can face hurdles in accessing data owned by states. To address these barriers, the Data Core of the proposed State Alzheimer’s Research Support Center (StARS) will create a centralized set of resources and data for state policymakers and outside researchers to rigorously evaluate integrated/coordinated dementia care programs, including their effectiveness in delaying or preventing care transitions. We have assembled a multi-disciplinary group with expertise in AD/ADRD, data infrastructures, and federal, state, and sub-state data to complete the following aims: 1) create a data warehouse and data governance plan to support the rigorous evaluation of state AD/ADRD programs and policies, including an inventory of state regulations governing home and community-based dementia services, a catalog of the data contributed and created via StARS investigators and affiliates, and standardized processes for ingesting/extracting, harmonizing, and linking data while protecting privacy; 2) provide overall intellectual and technical assistance to states in obtaining data use agreements, uploading data, and cleaning, linking, harmonizing, and analyzing data; and 3) disseminate data products (e.g., aggregated and de-identified data sets), chartbooks (e.g., state summaries of AD/ADRD prevalence and service utilization), resources (e.g., data dictionaries and metadata), and best practices (e.g., via Data Workshops) on data analysis. We will work closely with the other StARS Cores, conduct rigorous evaluation of our performance metrics, and emphasize flexibility and responsiveness to the unique needs of each of the Center affiliates. By establishing this robust and sustainable infrastructure and deep relationships with state data providers, our highly qualified and multidisciplinary team will motivate other state entities to share data resources, thereby promoting more rapid improvement in care for persons with AD/ADRD and their caregivers.