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

> **NIH NIH U54** · UNIVERSITY OF MINNESOTA · 2024 · $794,664

## Abstract

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 while attending to
health equity issues; 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 equitable 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.

## Key facts

- **NIH application ID:** 10986806
- **Project number:** 1U54AG089300-01
- **Recipient organization:** UNIVERSITY OF MINNESOTA
- **Principal Investigator:** Kali St. Marie Thomas
- **Activity code:** U54 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $794,664
- **Award type:** 1
- **Project period:** 2024-09-15 → 2029-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10986806

## Citation

> US National Institutes of Health, RePORTER application 10986806, Data Core - The State Alzheimer's Research Support Center (StARS) (1U54AG089300-01). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10986806. Licensed CC0.

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