2026-07-08 ワシントン大学セントルイス校（WashU）
＜関連情報＞
- https://source.washu.edu/2026/07/new-comprehensive-data-platform-could-transform-alzheimers-research-treatment/
- https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.71207
アルツハイマー病研究センタープログラムおよびそれ以降の精密医療を推進するための、実世界データとゴールドスタンダードの縦断的臨床・ゲノムデータの統合：概念実証データプラットフォーム 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
Sarah Biber, Jessica E. Culhane, Maria G. Prado, Satish Mathew, Yohali Burrola-Mendez, Imara I. West, Sarah Van Heiden, Jimmy Phuong, Shilpa Allimatti, Liam G. Lane, Krista L. Moulder, Brittany K. Hale, Amanda Kuzma, Li-San Wang, Sujuan Gao, Albert Lai, Karthik Natarajan, Sophia Wang, John C. Morris, James M. Noble, Sean D. Mooney, Walter Kukull, Andrew J. Saykin, Kari A. Stephens
Alzheimer’s & Dementia Published: 11 March 2026
DOI:https://doi.org/10.1002/alz.71207
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.
Highlights
- Linking real-world and clinical research data can provide additional ADRD insights.
- Required governance and data security for multisite data integration is complex.
- This POC study linked real-world and clinical data for > 2000 ADRC participants.
