To tackle the growing public health challenge presented by Alzheimer's disease, researchers are working toward creative and transformative approaches in how they detect, treat and follow the neurodegenerative condition in patients.
In an article published in Alzheimer's & Dementia, Sarah A. Biber, an associate professor of neurology at WashU Medicine, and collaborators describe a proof-of-concept platform they developed that demonstrates the feasibility of securely linking longitudinal multimodal patient-level data across sources to advance Alzheimer's research and care.
Working with researchers at WashU Medicine's Knight Alzheimer's Disease Research Center (ADRC), the Indiana University ADRC and the Columbia University ADRC, a team from the National Alzheimer's Coordinating Center (NACC) developed a data integration and governance model that has the potential to be scaled broadly across all ADRCs. This multimodal data framework is expected to drive discovery and enable individualized treatment in Alzheimer's disease and related dementias, as well as present a standardized implementation model for data consortia across human diseases.
NACC, currently based at the University of Washington in Seattle, was founded in 1999 by Walter A. Kukull, now a professor of neurology at WashU Medicine, to manage and streamline the unprecedented scale of data generated by the nearly 40 centers participating in the National Institutes of Health (NIH)-funded ADRC program. Biber co-led the NACC from 2021 to 2025 as executive director.
The study's authors note that integrating NACC's existing data with data from electronic health records, Medicare claims and genomic information could help scientists build predictive models for disease development and progression in individuals, diagnose patients earlier and better match individuals to specific disease-modifying treatments.
