National Alzheimer's Coordinating Center

What National Alzheimer's Coordinating Center does

The National Alzheimer's Coordinating Center (NACC) is a federally funded research coordination center operating within the Department of Epidemiology at the University of Washington School of Public Health in Seattle. NACC serves as the centralized data repository and collaboration hub for the National Institute on Aging's (NIA) Alzheimer's Disease Research Centers (ADRC) Program, collecting, integrating, and disseminating longitudinal clinical, neuroimaging, genetic, neuropathology, and biomarker data from 37 active ADRCs across 25 states — covering 56,000+ participants, 217,000+ clinical assessments, 8,700+ neuropathology exams, and 15,000+ MRI/PET participants built over 25+ years.

NACC's core technology is the Flywheel-based NACC Data Platform, which hosts the standardized Uniform Data Set (UDSv4 and prior versions), supplementary modules for Lewy Body Dementia, Frontotemporal Lobar Degeneration, Down Syndrome, and Neuropathology, and partner-led imaging initiatives (SCAN for standardized MRI/PET protocols and CLARiTI for nationwide multi-etiology dementia imaging). Supporting infrastructure includes REDCap for electronic data capture, the ADRC Portal for center-specific submissions, the Multimodal Query Tool, the Data Front Door, the MRI Preview System, and integrations with LONI (imaging), NIAGADS/ADGC (genetics), and NCRAD (biospecimens). All NACC data is provided free of charge to qualified researchers worldwide under a Data Use Agreement.

NACC's business model is grant-funded rather than revenue-generating: the organization operates as a non-profit research entity with no pricing tiers or fees. Core operations are supported by NIA grant U24 AG072122, while a separate $150 million five-year NIH/NIA award (U01 AG082350, 2024) funds the CLARiTI imaging initiative in which NACC serves as the data coordinating center. Distribution is exclusively digital — researchers access data via the Data Front Door, AD Workbench, and the formal Data Request Process — and engagement is built through newsletters, the ADRC Community Forum (Discourse-hosted), webinars, semi-annual ADRC meetings, and the Dementia Matters Podcast.

Name

National Alzheimer's Coordinating Center

Legal name

National Alzheimer's Coordinating Center

Website

https://naccdata.org

Company type

Private

Founded year

1984

Operating status

Operating

Headcount range

11–50 employees

Short description

NACC is a federally funded research coordination center within the University of Washington that manages and disseminates standardized multimodal Alzheimer's disease data from 37 ADRCs to the global research community free of charge.

Ownership category

akta.pro rank

Product category

Alzheimer's Disease Research Data Coordination

NAICS

Computing Infrastructure Providers, Data Processing, Web Hosting, and Related Services (518)

akta.pro primary industry

Electronic Data Capture (EDC) Platforms (HLACAOAA)

akta.pro secondary industry

HIE Platforms & Network Services (Community/Regional/National) (HLACABAB)

Keywords

• Alzheimer's disease research
• Clinical research data
• Neuroimaging database
• Biomedical data coordination
• Dementia research data

Headquarters

HQ city

Seattle

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Technology or R&D, Operations, Infrastructure

Revenue model

1. Government Research Funding: NACC is funded by the National Institute on Aging (NIA) through grant U24 AG072122. As a federally funded research coordination center, all data is provided free of charge to researchers worldwide. The organization operates as a non-profit research entity within the University of Washington School of Public Health.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

The National Alzheimer's Coordinating Center (NACC) operates as the centralized data repository and collaboration hub for the National Institute on Aging's Alzheimer's Disease Research Centers (ADRC) Program. NACC collects, integrates, and disseminates standardized longitudinal clinical, imaging, genetic, neuropathology, and biomarker data contributed by 37 active ADRCs across 25 states. All data is provided free of charge to qualified researchers worldwide through a formal data request process, the Data Front Door, and the NACC Data Platform built on Flywheel infrastructure.

Product overview

NACC operates as a centralized data repository and collaboration hub for the National Institute on Aging's Alzheimer's Disease Research Centers (ADRC) Program. The core offering is the NACC Data Platform — a Flywheel-based infrastructure hosting longitudinal clinical, imaging, genetic, neuropathology, and biomarker data contributed by 37 ADRCs across 25 states. Researchers access data through the Data Front Door, AD Workbench, Multimodal Query Tool, and web-query systems. Data collection is standardized via the Uniform Data Set version 4 (UDSv4), with supplementary diagnosis-specific modules for Lewy Body Dementia (LBD Module), Frontotemporal Lobar Degeneration (FTLD Module), and Down Syndrome (DS Module). NACC's partner initiatives — SCAN (standardized neuroimaging protocols) and CLARiTI (a nationwide MRI/PET imaging study of 2,000 participants) — feed directly into the Data Platform. Supporting tools include the ADRC Portal for center-specific data management, REDCap-based electronic data capture, the Neuropathology Data Set, COVID-19 forms, calculators, and the NACC Navigator editorial hub. All data is freely available to qualified researchers worldwide.

Differentiator

Problem solved

Functional benefit

Brands

• CLARiTI: ADRC Consortium for Clarity in ADRD Research Through Imaging - a nationwide research initiative focused on advancing understanding of Alzheimer's disease and related dementias through cutting-edge brain imaging techniques using standardized PET and MRI protocols.
• SCAN
• UDS

Products and services

• NACC Data Platform Centralized data repository and collaboration hub for the NIA's ADRC Program, providing secure infrastructure for collecting, integrating, and sharing longitudinal clinical, imaging, genetic, neuropathology, and biomarker data from 37+ ADRCs across the US. Built on Flywheel infrastructure with secure data submission pipelines and the Data Front Door for streamlined researcher access.
• ADRC Portal

Named customers2 records

Segments3 records

Ideal customer profiles2 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration11 records

Feature6 records

Partnerships

Twelve partnerships are on record, tiered core and minor.

• CLARiTI (ADRC Consortium for Clarity in ADRD Research Through Imaging)coreStrategic or Co-development Partner · 9 January 2024Five-year nationwide research initiative funded by NIA (U01 AG082350) led by University of Wisconsin-Madison. NACC serves as the data coordinating center. CLARiTI brings standardized PET and MRI imaging into the ADRC consortium to better understand multi-etiology dementia. NACC manages study logistics, data collection, and supports research sites with subawards.
• 37 Active Alzheimer's Disease Research Centers (ADRCs)coreStrategic or Co-development PartnerNACC collects data from 37 active ADRCs across 25 states. These research centers contribute longitudinal clinical, imaging, genetic, and neuropathology data. Over 42 ADRCs have participated over the past 25+ years.
• SCAN (Standardized Centralized Alzheimer's & Related Dementias Neuroimaging)coreTechnology or IntegrationSCAN provides standardized PET and MRI imaging protocols across ADRC sites. Imaging data collection and acquisition follow SCAN standardized protocols. SCAN processes MR images using FreeSurfer and provides standard readouts including parcellations of regional brain volumes, cortical thickness, and surface area.
• LONI (Laboratory of Neuro Imaging)coreTechnology or IntegrationLONI serves as the repository for SCAN and CLARiTI neuroimaging data. Stores DICOM files and imaging data from ADRC Clinical Core research participants.
• Alzheimer's Disease Genetics Consortium (ADGC)coreTechnology or IntegrationPartner providing genetic data (GWAS) for over 26,600 NACC participants. Available through data request process.
• NIAGADS (National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site)coreTechnology or IntegrationPartner providing genetic data (GWAS) for over 26,600 NACC participants. Available through data request process.
• NCRAD (National Centralized Repository for Alzheimer's Disease and Related Dementias)coreTechnology or IntegrationPartner providing DNA, plasma, and CSF biospecimen data for over 27,000 NACC participants. Available through data request process.
• REDCapcoreTechnology or IntegrationElectronic Data Capture platform used by NACC for survey instruments, evaluation tools, and data collection. Laura McLeod has over 15 years of REDCap development experience and leads REDCap administration at NACC.
• DiscoursecoreTechnology or IntegrationPlatform provider for the ADRC Program Community Forum, an online space for ADRC Program members to collaborate, share knowledge, and provide feedback on NACC tools.
• FlywheelcoreTechnology or IntegrationInfrastructure platform underlying the NACC Data Platform. Ben Keller served as lead software engineer for the creation of the Flywheel-based NACC Data Platform.
• University of Washington School of Public Health, Department of EpidemiologycoreOthersNACC is located within the Department of Epidemiology at the University of Washington School of Public Health. Kari A. Stephens, PhD, serves as NACC Director.
• Alzheimer's AssociationminorStrategic or Co-development PartnerCollaborates with NACC on the New Investigator Award Program (NIAP). Publishes annual Alzheimer's Disease Facts and Figures report.

Scale indicators10 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• All of Us Research Program: NIH-funded large-scale longitudinal research program collecting health data from a diverse US participant pool. Comparable as a federally funded research data repository/coordinating center, but broader in disease scope.

Direct peers

• UK Biobank: Large-scale prospective biomedical database with 500,000+ participants including deep phenotyping, imaging, and genetic data. Direct peer as a longitudinal multimodal research data platform widely used by the global research community.
• Accelerating Medicines Partnership Program for Alzheimer's Disease (AMP-AD): NIH-led public-private partnership generating multi-omic Alzheimer's disease data from brain tissue and biofluids. Direct peer as a federally coordinated AD/ADRD research data initiative with shared target audience of researchers.
• Sage Bionetworks: Non-profit biomedical research organization that builds infrastructure for open collaborative science, including data repositories and analysis platforms. Direct peer as a non-profit research data platform enabling multi-site studies.
• NCI Cancer Research Data Commons: NIH-funded cancer-focused data ecosystem providing cloud-based access to petabytes of research data. Direct peer as an NIH-coordinated disease-specific data repository and analysis platform.
• Global Alzheimer's Association Interactive Network (GAAIN): Federated Alzheimer's disease research data network sharing datasets across international research centers. Direct peer as another Alzheimer's-focused research data sharing platform with overlapping researcher community.
• ENIGMA Consortium: International consortium pooling brain imaging data from hundreds of research groups worldwide. Direct peer for standardized brain imaging research data sharing across multiple sites.
• Alzheimer's Disease Neuroimaging Initiative (ADNI): Longitudinal multicenter Alzheimer's disease imaging and biomarker study. Directly comparable to NACC in modality (MRI, PET, clinical, biomarkers) and target audience (AD researchers), though smaller in cohort size and focused on imaging.

Others

• Alzheimer's Disease Genetics Consortium (ADGC): NIA-funded consortium generating GWAS data on Alzheimer's disease — actually a NACC partner providing genetic data for 26,600+ participants. Included as an adjacent ecosystem participant rather than direct competitor.

Emerging players

• Observational Health Data Sciences and Informatics (OHDSI): International collaborative generating large-scale observational health data analyses via a common data model. Emerging peer in health data standardization and multi-site observational research infrastructure.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xbsky.app/profile/naccdata.org
• YouTubeyoutube.com/c/NACCNationalAlzheimersCoordinatingCenter/featured
• LinkedInlinkedin.com/company/uw-nacc

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about National Alzheimer's Coordinating Center