When Sarah Biber thinks about the future of Alzheimer's disease, she sees a world where doctors can predict who might develop the disease before symptoms even appear—and match each patient with exactly the right treatment.
It's an ambitious goal, but Biber and her team at Washington University School of Medicine in St. Louis are taking a concrete step toward making it real. In research published in the journal Alzheimer's & Dementia, they've built a data platform that securely connects information from three major Alzheimer's research centers across the United States.
The project, led by Biber, an associate professor of neurology, linked together records from the Knight Alzheimer's Disease Research Center at WashU, the Indiana University center, and the Columbia University center. Together with the National Alzheimer's Coordinating Center (NACC), the team showed it was possible to combine gold-standard clinical research data with electronic health records, insurance claims, and genetic information—all while protecting patient privacy.
"It was very much a socio-technical challenge we were solving," Biber said.
The pilot program successfully created detailed health profiles for more than 2,000 individuals, following their data over time. That might sound like a small number, but it's actually a big deal. Alzheimer's is an incredibly complex disease. It develops slowly—sometimes for decades before any memory problems show up—and looks different in every person who gets it. Scientists have struggled to study it partly because no single hospital or research center has enough information to spot meaningful patterns.
By linking data across multiple institutions, researchers can now see a much fuller picture. They can track how the disease progresses in different people, identify early warning signs, and eventually predict which treatments might work best for which patients. This approach, known as precision medicine, aims to tailor healthcare to each individual's unique biology and circumstances.
The platform also opens the door to including communities that have historically been left out of Alzheimer's research, such as rural populations or certain racial and ethnic groups. That matters because research findings only help everyone if they include everyone.
NACC itself has been central to this work since 1999, when Walter Kukull, now also at WashU Medicine, founded the organization to manage the growing flood of data from the network of research centers. Biber served as NACC's executive director from 2021 to 2025.
If this pilot grows into a full nationwide system, the researchers say it could speed up discoveries about Alzheimer's, help doctors diagnose patients earlier, and guide people toward treatments built just for them. For the millions of families affected by this disease, that future can't come soon enough.