Evidence map›Paper›PMID 41808605›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2026

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 and 14 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

24 authors.

Sarah BiberDepartment of Neurology, Washington University School of Medicine in St. Louis, Saint Louis, Missouri, USA.
Jessica E CulhaneDepartment of Epidemiology, University of Washington, Seattle, Washington, USA.ORCID 0009-0008-8441-6703
Maria G PradoDepartment of Family Medicine, University of Washington, Seattle, Washington, USA.
Satish MathewDepartment of Epidemiology, University of Washington, Seattle, Washington, USA.
Yohali Burrola-MendezDepartment of Family Medicine, University of Washington, Seattle, Washington, USA.
Imara I WestDepartment of Family Medicine, University of Washington, Seattle, Washington, USA.
Sarah Van HeidenIndiana Alzheimer's Disease Research Center, IU Health Neuroscience Center, Indianapolis, Indiana, USA.
Jimmy PhuongDepartment of Biomedical Informatics and Medical Education, University of Washington, Seattle, Washington, USA.
Shilpa AllimattiNational Alzheimer's Coordinating Center, University of Washington, Seattle, Washington, USA.
Liam G LaneDepartment of Epidemiology, University of Washington, Seattle, Washington, USA.
Krista L MoulderDepartment of Neurology, Washington University School of Medicine in St. Louis, Saint Louis, Missouri, USA.
Brittany K HaleDepartment of Neurology, Washington University School of Medicine in St. Louis, Saint Louis, Missouri, USA.
Amanda KuzmaDepartment of Pathology and Laboratory Medicine, Penn Neurodegeneration Genomics Center, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Li-San WangDepartment of Pathology and Laboratory Medicine, Penn Neurodegeneration Genomics Center, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Sujuan GaoIndiana Alzheimer's Disease Research Center, IU Health Neuroscience Center, Indianapolis, Indiana, USA.
Albert LaiInstitute for Informatics, Data Science and Biostatistics, Washington University School of Medicine in St. Louis, Saint Louis, Missouri, USA.
Karthik NatarajanColumbia University Irving Medical Center, New York, New York, USA.
Sophia WangIndiana Alzheimer's Disease Research Center, IU Health Neuroscience Center, Indianapolis, Indiana, USA.
John C MorrisDepartment of Neurology, Washington University School of Medicine in St. Louis, Saint Louis, Missouri, USA.
James M NobleColumbia University Irving Medical Center, New York, New York, USA.
Sean D MooneyCenter for Information Technology, National Institutes of Health, Bethesda, Maryland, USA.
Walter KukullDepartment of Neurology, Washington University School of Medicine in St. Louis, Saint Louis, Missouri, USA.
Andrew J SaykinIndiana Alzheimer's Disease Research Center, IU Health Neuroscience Center, Indianapolis, Indiana, USA.
Kari A StephensDepartment of Family Medicine, University of Washington, Seattle, Washington, USA.

Funding

Large Scale Sequencing and Analysis of GenomesU54HG003067 · NHGRI · MASSACHUSETTS INSTITUTE OF TECHNOLOGY · PI GABRIEL, STACEY, LANDER, ERIC S · 2004 to 2015
$568.6M
Large Scale Genome SequencingU54HG003079 · NHGRI · WASHINGTON UNIVERSITY · PI DUTCHER, SUSAN K · 2004 to 2016
$445.7M
The Human Genome Sequencing CenterU54HG003273 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI GIBBS, RICHARD A · 2004 to 2015
$341.3M
National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD)U24AG021886 · NIA · INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS · PI TATIANA M. FOROUD · 2002 to 2026
$119.8M
Alzheimer's Disease Genetics ConsortiumU01AG032984 · NIA · UNIVERSITY OF PENNSYLVANIA · PI SCHELLENBERG, GERARD DAVID · 2009 to 2024
$60.4M
National Alzheimer's Coordinating CenterU24AG072122 · NIA · UNIVERSITY OF WASHINGTON · PI STEPHENS, KARI A · 2021 to 2025
$45.8M
THE NIA GENETICS OF ALZHEIMER'S DISEASE DATA STORAGE SITEU24AG041689 · NIA · UNIVERSITY OF PENNSYLVANIA · PI LI-SAN WANG · 2012 to 2026
$42.3M
MVP Data Integration into the ADSP Phenotype Harmonization ConsortiumU24AG074855 · NIA · VANDERBILT UNIVERSITY MEDICAL CENTER · PI CUCCARO, MICHAEL L, HOHMAN, TIMOTHY J · 2021 to 2025
$37.5M
Research Education ComponentP30AG062422 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Katherine P Rankin · 2019 to 2026
$36.9M
Research Education ComponentP30AG062421 · NIA · MASSACHUSETTS GENERAL HOSPITAL · PI BRADFORD C DICKERSON · 2019 to 2026
$36.5M
UCSD Shiley-Marcos Alzheimer's Disease Research Center P30P30AG062429 · NIA · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI DOUGLAS R GALASKO · 2019 to 2026
$34.9M
Wisconsin Alzheimer's Disease Research CenterP30AG062715 · NIA · UNIVERSITY OF WISCONSIN-MADISON · PI Sanjay Asthana · 2019 to 2026
$34.5M
ADSP Phenotype Harmonization Consortium (ADSP-PHC): U24 AG074855, U01 AG068057, and R01 AG059716)Alzheimer's Disease Genetic Consortium (ADGC) RC2AG036528Alzheimer's Disease Genetic Consortium (ADGC) U01AG032984American Genome Center at the Uniformed Services University of the Health Sciences U01AG057659Broad Institute Genome Center U54HG003067Dissecting the Genomic Etiology of non-Mendelian Early-Onset Alzheimer Disease R01AG064614Genentech, IncGenome Center for Alzheimer's Disease U54AG052427Human Genome Sequencing Center at Baylor College of Medicine U54HG003273John P. Hussman Institute for Human Genomics (HIHG) Center for Genome Technology (CGT)National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD) U24AG021886NHGRI NIH HHS U54 HG003067NHGRI NIH HHS U54 HG003079NHGRI NIH HHS U54 HG003273NIA NIH HHS P20 AG068082NIA NIH HHS P30 AG062421NIA NIH HHS P30 AG062422NIA NIH HHS P30 AG062429NIA NIH HHS P30 AG062677NIA NIH HHS P30 AG062715NIA NIH HHS P30 AG066444NIA NIH HHS P30 AG066462NIA NIH HHS P30 AG066468NIA NIH HHS P30 AG066506NIA NIH HHS P30 AG066507NIA NIH HHS P30 AG066508NIA NIH HHS P30 AG066509NIA NIH HHS P30 AG066511NIA NIH HHS P30 AG066512NIA NIH HHS P30 AG066514NIA NIH HHS P30 AG066515NIA NIH HHS P30 AG066518NIA NIH HHS P30 AG066519NIA NIH HHS P30 AG066530NIA NIH HHS P30 AG066546NIA NIH HHS P30 AG072931NIA NIH HHS P30 AG072946NIA NIH HHS P30 AG072947NIA NIH HHS P30 AG072958NIA NIH HHS P30 AG072959NIA NIH HHS P30 AG072972NIA NIH HHS P30 AG072973NIA NIH HHS P30 AG072975NIA NIH HHS P30 AG072976NIA NIH HHS P30 AG072977NIA NIH HHS P30 AG072978NIA NIH HHS P30 AG072979NIA NIH HHS P30 AG086401NIA NIH HHS P30 AG086404NIA NIH HHS R01 AG059716NIA NIH HHS R01 AG064614NIA NIH HHS R01 AG079280NIA NIH HHS RC2 AG036528NIA NIH HHS U01 AG032984NIA NIH HHS U01 AG049508NIA NIH HHS U01AG049508NIA NIH HHS U01 AG052411NIA NIH HHS U01AG052411NIA NIH HHS U01 AG057659NIA NIH HHS U01 AG062943NIA NIH HHS U01 AG068057NIA NIH HHS U24 AG021886NIA NIH HHS U24 AG041689NIA NIH HHS U24 AG072122NIA NIH HHS U24 AG074855NIA NIH HHS U54 AG052427Sequencing for the ADSP Follow Up Study (FUS) U01AG057659Sequencing for the ADSP Follow Up Study (FUS) U01AG062943The National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) U24AG041689Washington University Genome Institute U54HG003079
6 · The paper itself

Abstract

introductionIntegrating 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.

methodsIn 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.

resultsWe 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.

Indexed as

Alzheimer DiseaseElectronic Health RecordsGenomicsPrecision MedicineHumansLongitudinal StudiesMedicareProof of Concept StudyUnited StatesAlzheimer's disease and related dementias (AD/ADRD)Alzheimer's Disease Research Centers (ADRCs)Centers for Medicare & Medicaid Services (CMS) claimselectronic health record (EHR)genomicsprecision medicinereal‐world data (RWD)Uniform Data Set (UDS)

Identifiers

PMID41808605
PMCPMC12976656

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.