Integrating real-world data with gold-standard longitudinal clinical and genomic data to advance precision medicine for the Alzheimer's Disease Research Center Program and beyond: a proof-of-concept data platform

Abstract

Introduction: Integrating real-world data (RWD) with clinical research datasets creates more complete, context-rich resources to drive discovery and enable precision medicine in Alzheimer's disease and related dementias. The National Alzheimer's Coordinating Center conducted a proof-of-concept (POC) project to link its longitudinal Uniform Data Set (UDS) with electronic health records (EHRs), Medicare claims, and genomic data. Methods: In partnership with three Alzheimer's Disease Research Centers (ADRCs), we developed scalable data pipelines and a governance framework to collect, harmonize, and securely share linked data through the National Institute on Aging's LINKAGE Program. Results: We linked UDS and EHR data for 2206 participants and added Medicare claims for 1522. Nearly 500 participants have 5 or more years of linked data, with genomic profiles available for 93%. Discussion: This POC demonstrates the feasibility of integrating clinical, genomic, and RWD across ADRCs, offering a scalable model for broader implementation.