NAACCR

What NAACCR does

NAACCR (North American Association of Central Cancer Registries, Inc.) is a nonprofit professional organization founded in 1987 and headquartered in Springfield, Illinois, that develops and maintains uniform data standards for cancer registration across North America. Its core offerings are standards-based: the Data Standards & Data Dictionary (DS & DD), the Edits Metafile for data validation, the XML Data Exchange Standard, annual Implementation Guidelines, and ICD-O-3 coding guidance. These standards are used by 65 of 71 population-based central cancer registries in the U.S. and Canada to collect, validate, and exchange cancer incidence data spanning 1995–present.

The organization supplements its core standards with software tools (NAACCR*Prep, Match*Pro, the Call for Data Portal, an open-source NAACCR-XML Java library on GitHub), data products (Cancer in North America/CiNA incidence, mortality, survival, and prevalence statistics delivered through CiNA Explorer and CiNA Maps plus SEER*Stat-hosted research datasets accessed via the DaRT request system), a registry certification program (Gold and Silver tiers plus Fitness for Use recognition), and an education platform (NAACCR Education and Training/NET plus an annual conference and the NAACCR Special Edition Journal of Registry Management). NAACCR is also developing the NCI-funded Virtual Pooled Registry Cancer Linkage System (VPR-CLS) to connect researchers with multiple registries for cancer surveillance linkage.

NAACCR's business model is a hybrid nonprofit construct: federal government contracts and cooperative agreements with the National Cancer Institute (Contract 75N91021D00018 / 75N91021F00001) and the Centers for Disease Control and Prevention (5NU58DP007575) anchor operating funding, while membership dues and fees from central cancer registries, individual professionals, and organizational members, plus certification fees, data product licensing, and education/training revenue, provide diversified income. Governance is provided by a member-elected Board of Directors; the organization employs 11–50 staff and serves federal and state/provincial public-health agencies, hospital registries, cancer researchers, and epidemiologists primarily across the U.S. and Canada.

Name

NAACCR

Legal name

NAACCR, Inc.

Website

https://naaccr.org

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

11–50 employees

Short description

NAACCR (North American Association of Central Cancer Registries, Inc.) is a Springfield, Illinois–based nonprofit that develops and maintains uniform data standards, certification, and cancer statistics (CiNA) for central cancer registries across the U.S. and Canada.

Ownership category

akta.pro rank

Product category

Cancer Registry Data Standards

NAICS

Software Publishers (513210), Computing Infrastructure Providers, Data Processing, Web Hosting, and Related Services (518)

SIC

Services-Computer Processing & Data Preparation (7374)

akta.pro primary industry

Data Governance, Standards & Interoperability (ICD, HL7/FHIR, LOINC, SNOMED) (HLAJAJAM)

akta.pro secondary industries

Pathology Reporting, Synoptic Templates & Cancer Registry Interfaces (HLACAMAJ), Real-World Data (RWD) Platforms & Clinical Data Curation (HLACAIAJ)

Keywords

• Cancer registry standards
• Cancer surveillance data
• Health data standards
• Cancer statistics
• Registry certification

Headquarters

HQ city

Springfield

HQ country

United States

HQ region

North America

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Technology or R&D, Operations

Revenue model

1. Membership Dues and Fees: NAACCR operates as a membership-based professional organization with various membership tiers and associated fees for central cancer registries, individual professionals, and organizational members.
2. Registry Certification Program: Annual certification program for registries with Gold and Silver certification levels, and Fitness for Use recognition for survival and prevalence data quality.
3. Data Products and Access: CiNA data products including public use datasets, research datasets, and specialized data products. Researchers request access via the DaRT (Data Request Tracking) system.
4. Education and Training: Educational programs including NAACCR Education and Training (NET), certification exam preparation, webinars, and professional development resources.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

NAACCR develops and maintains uniform data standards for cancer registration, including the Data Standards & Data Dictionary, XML Data Exchange Standard, and Edits Metafile. It operates an annual Registry Certification program (Gold and Silver levels), produces Cancer in North America (CiNA) statistics and data products, and provides education/training and research tools (VPR-CLS, DaRT, CiNA Explorer) that enable standardized cancer surveillance across North American registries.

Product overview

NAACCR is a professional organization that develops and promotes uniform data standards for cancer registration, rather than a commercial software company with a traditional product portfolio. Its offerings consist of: (1) Core Standards Products — the Data Standards & Data Dictionary (DS & DD), Edits Metafile, XML Data Exchange Standard, and Implementation Guidelines that define how cancer registry data is collected, validated, and exchanged; (2) Software Tools — including NAACCR*Prep, Match*Pro, the Call for Data Portal, and the NAACCR-XML Java Library for data processing and deduplication; (3) Data Products and Statistics — CiNA Explorer, CiNA Maps, CiNA Data Products (Public Use and Research Datasets), DaRT data request system, CaRI Database, and the VPR-CLS for multi-registry linkage; (4) Certification Services — Gold and Silver Registry Certification and Fitness for Use recognition; (5) Publications — the Annual Report to the Nation, CiNA Volumes, and the JRM Special Edition; and (6) Education Services — the NET platform with courses, webinars, and CTR exam preparation. These offerings work together as an integrated ecosystem: registries use the Data Standards and Edits Metafile to collect compliant data, process submissions with NAACCR*Prep and Match*Pro, submit via the Call for Data Portal for certification, and the resulting data populates CiNA statistics products for public and researcher access.

Differentiator

Problem solved

Functional benefit

Products and services

• NAACCR Data Standards & Data Dictionary (DS & DD)

Quantifiable outcome

• 65 of 71 North American population-based cancer registries participate in certification
• +2 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

Feature5 records

Partnerships

Six partnerships are on record, tiered core.

• National Cancer Institute (NCI)coreStrategic or Co-development PartnerNCI collaborates with NAACCR on cancer surveillance, providing funding and co-developing cancer statistics standards. NCI supports the Virtual Pooled Registry Cancer Linkage System (VPR-CLS) and utilizes NAACCR data for national cancer reporting. The partnership involves Contract number 75N91021D00018 / 75N91021F00001.
• Centers for Disease Control and Prevention (CDC)coreStrategic or Co-development PartnerCDC collaborates with NAACCR through cooperative agreement (5NU58DP007575) supporting cancer surveillance infrastructure. CDC's National Program of Cancer Registries (NPCR) works with NAACCR on registry operations standards and data quality initiatives.
• National Center for Health Statistics (NCHS)coreStrategic or Co-development PartnerNCHS contributes to the Annual Report to the Nation on the Status of Cancer, collaborating with NAACCR, NCI, CDC, and ACS to produce comprehensive cancer statistics.
• Statistics CanadacoreStrategic or Co-development PartnerStatistics Canada partners with NAACCR to include Canadian provincial and territorial cancer registry data in CiNA statistics, enabling cross-border cancer surveillance.
• American Cancer Society (ACS)coreStrategic or Co-development PartnerACS collaborates on the Annual Report to the Nation on the Status of Cancer, contributing researchers and cancer surveillance expertise to the joint reporting effort.
• National Cancer Registrars Association (NCRA)coreStrategic or Co-development PartnerNAACCR maintains annual collaboration with NCRA on the NAACCR Special Edition of the Journal of Registry Management, providing opportunities for members to publish cancer surveillance research.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Cancer Institute (NCI): Federal cancer research agency under NIH that funds NAACCR via contract 75N91021D00018 and operates the SEER program. NCI is both NAACCR's primary funder and a major stakeholder that uses NAACCR-certified data for national cancer reporting.
• American Cancer Society (ACS): Largest U.S. voluntary health organization focused on cancer, collaborating with NAACCR on the Annual Report to the Nation. ACS operates a much broader portfolio (research funding, patient support, advocacy) but overlaps with NAACCR on cancer surveillance statistics publication.

Direct peers

• International Association of Cancer Registries (IACR): International professional body that promotes cancer registration standards globally and convenes registries from over 100 countries. IACR is the international analog to NAACCR's North American focus, with overlapping goals around uniform data standards and registry capacity-building.
• CDC National Program of Cancer Registries (NPCR): CDC's cancer registry program covering state registries not in SEER, with combined NPCR+SEER coverage achieving 100% U.S. population surveillance. NPCR funds NAACCR directly via Cooperative Agreement 5NU58DP007575, and the two organizations jointly define registry operations standards.
• Surveillance, Epidemiology, and End Results (SEER) Program: NCI's flagship population-based cancer surveillance program covering ~48% of the U.S. population. SEER and NAACCR collaborate closely — SEER registries submit data through NAACCR standards, and SEER*Stat is the primary access tool for CiNA research datasets. They operate as complementary cancer surveillance infrastructure.
• European Network of Cancer Registries (ENCR): Network coordinated by the European Commission's Joint Research Centre that harmonizes European cancer registry data. ENCR operates similarly to NAACCR at a continental level, providing comparable standards-setting, data quality assessment, and population-level cancer statistics for European jurisdictions.
• National Cancer Registrars Association (NCRA): Professional association for cancer registrars (CTR credential holders) that co-publishes the NAACCR Special Edition of the Journal of Registry Management. NCRA focuses on individual professional certification and education while NAACCR focuses on institutional data standards — making them sister organizations in the cancer registry ecosystem.

Regional players

• Canadian Partnership Against Cancer: Canadian federally-funded organization that coordinates cancer control strategy across Canadian provinces and territories. It partners with NAACCR on Canadian cancer registry participation and uses CiNA data products for national Canadian cancer surveillance — a regional counterpart in NAACCR's North American scope.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/NAACCR
• Facebookfacebook.com/NAACCR
• LinkedInlinkedin.com/company/naaccr-inc-

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about NAACCR