apoe4.science

Resources

Where to find ε4/ε4 data

Cohorts, repositories and biobanks with APOE genotype linked to clinical, imaging, omic or autopsy data. Sizes are approximate; check each resource for current numbers and terms.

ResourceBest forAccess
NACCClinical trajectories, age at onset and pathologyOnline data request form
NIAGADSGenetic modifiers, ancestry effectsFormal data access request with a research use statement
ADSPProtective and risk variants within ε4/ε4Through NIAGADS
NCRADNew biomarker measurements on existing cohortsBiosample request reviewed by NCRAD and the contributing studies
ADNIBiomarker and imaging timelinesOnline application and data use agreement through LONI’s Image and Data Archive
A4 StudyPreclinical ε4/ε4 biology and ARIA riskData use agreement through the A4 data portal
AD Knowledge PortalBrain molecular mechanismsSynapse account and certification
UK BiobankLarge-scale prediction and outcomesProject application with a fee
All of UsDiverse ancestries and health recordsInstitutional data use agreement
SEA-ADCell-type brain atlasOpen access

NACC

National Alzheimer’s Coordinating Center

Run by
University of Washington; funded by NIA
Size
About 45,000 participants in the Uniform Data Set as of 2021, followed since 2005 across roughly 35 Alzheimer’s Disease Research Centers
Data
Yearly clinical and cognitive assessments, diagnoses, medications, neuropathology for brain donors, and linked imaging and biomarker data
For ε4/ε4
APOE genotype for most participants. The Fortea 2024 study used 3,297 genotyped NACC brain donors to show near-full penetrance of pathology in ε4/ε4.
Access
Online data request form; free; usually days to a few weeks

NIAGADS

NIA Genetics of Alzheimer’s Disease Data Storage Site

Run by
University of Pennsylvania; NIA’s designated repository for Alzheimer’s genetic data
Size
Dozens of genetic datasets, including the Alzheimer’s Disease Genetics Consortium (ADGC) genome-wide studies
Data
Genotype arrays, sequencing, summary statistics and associated phenotypes
For ε4/ε4
Genetic records of NACC participants can be linked to their NACC clinical data on request, enabling genotype-stratified trajectories.
Access
Formal data access request with a research use statement, institutional signing official and data use agreement; renewed yearly. NIH security standards apply.

ADSP

Alzheimer’s Disease Sequencing Project

Run by
NIA and NHGRI; data distributed through NIAGADS
Size
Whole-genome sequencing in tens of thousands of people, with growing African American, Hispanic and Asian representation
Data
Whole genomes and exomes, plus harmonized cognition, diagnosis and biomarker data from the ADSP Phenotype Harmonization Consortium
For ε4/ε4
Enough ε4/ε4 carriers across ancestries to look for variants that delay or hasten onset in homozygotes.
Access
Through NIAGADS, with the same request process. ADSP also asks for a plan to return derived data.

NCRAD

National Centralized Repository for Alzheimer’s Disease and Related Dementias

Run by
Indiana University; funded by NIA
Size
Biosamples from Alzheimer’s Disease Research Centers and many NIA-funded cohorts
Data
DNA, plasma, serum, spinal fluid and cell lines, linked to clinical data
For ε4/ε4
Stored samples from people with known genotype and outcomes, for measuring new biomarkers such as proteomic or epigenetic aging clocks.
Access
Biosample request reviewed by NCRAD and the contributing studies

ADNI

Alzheimer’s Disease Neuroimaging Initiative

Run by
Multi-site North American study; data shared through LONI at the University of Southern California
Size
Several thousand participants across study phases since 2004
Data
Repeated MRI, amyloid and tau PET, spinal fluid and plasma biomarkers, cognition and genetics
For ε4/ε4
Repeated imaging lets you compare when amyloid, tau and small bleeds appear in ε4/ε4 versus other genotypes.
Access
Online application and data use agreement through LONI’s Image and Data Archive

A4 Study

Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study, with the companion LEARN study

Run by
Alzheimer’s Therapeutic Research Institute (USC)
Size
More than 1,100 randomized amyloid-positive adults aged 65–85 without symptoms, plus amyloid-negative LEARN participants
Data
Amyloid PET at screening, tau PET in a subset, repeated MRI including microbleeds, cognition, plasma biomarkers and APOE genotype
For ε4/ε4
Shows how small brain bleeds accumulate in ε4/ε4 adults without symptoms (odds ratio 4.8 in a 2025 analysis).
Access
Data use agreement through the A4 data portal

AD Knowledge Portal

AMP-AD and MODEL-AD data portal

Run by
Sage Bionetworks (Synapse); funded by NIA
Size
Brain tissue from thousands of donors across ROSMAP, Mount Sinai Brain Bank, Mayo and diverse-cohort studies, plus mouse models
Data
Brain genomics, transcriptomics, single-cell, proteomics, metabolomics and epigenomics; humanized APOE4 knock-in mice from MODEL-AD
For ε4/ε4
Compare brain molecular changes by genotype in humans, and test APOE4 effects with age in mice.
Access
Synapse account and certification, plus a data use certificate signed by your institution for controlled data

UK Biobank

UK Biobank

Run by
UK charity; data analysed on its cloud Research Analysis Platform
Size
About 500,000 adults recruited 2006–2010; roughly 2% are ε4/ε4
Data
Genotypes and whole genomes, plasma proteomics in about 53,000 people, brain MRI in a subset, and linked hospital, death and primary-care records
For ε4/ε4
About 9,700 ε4/ε4 participants followed for over 15 years, many with proteomics, for prediction and risk-factor studies.
Access
Project application with a fee; analysis on the cloud platform

All of Us

NIH All of Us Research Program

Run by
NIH; analysis in the Researcher Workbench
Size
Hundreds of thousands of participants with whole-genome sequencing, with strong representation of groups underrepresented in research
Data
Whole genomes, electronic health records, surveys and wearable data
For ε4/ε4
APOE genotype can be derived from the genomes and studied across diverse ancestries alongside health records.
Access
Institutional data use agreement, then individual registration and training; genomic data is in the controlled tier

SEA-AD

Seattle Alzheimer’s Disease Brain Cell Atlas

Run by
Allen Institute, University of Washington and Kaiser Permanente Washington
Size
Middle temporal gyrus from 84 donors spanning the Alzheimer’s spectrum, plus neurotypical reference brains
Data
Single-nucleus RNA and chromatin data, spatial transcriptomics and quantitative neuropathology
For ε4/ε4
Cell-type-resolved brain changes across disease stages; check donor metadata for APOE genotype.
Access
Open access; also distributed through the AD Knowledge Portal and a public AWS bucket

Combining resources

Common pairings

  • NACC + NIAGADS/ADSP: clinical trajectories with whole-genome data, linked through NACC participant IDs.
  • NACC + NCRAD: outcomes plus stored blood or spinal fluid from the same people, for new biomarker assays.
  • ADNI or A4 + UK Biobank: deep imaging timelines alongside large-scale prediction and outcomes.

Each resource sets its own terms. NIH rules on controlled-access genomic data also limit the use of public generative AI tools with individual-level data, and require data to be held in approved secure environments.