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.

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.