Summary
A new national cancer registry has been established in France, with responsibility assigned to the Institut National du Cancer (INCa), the country’s leading cancer organization.
The registry aims to:
- Record cancer cases;
- Improve care pathways for people affected by cancer, from prevention through post-cancer care;
- Provide data for national and international research.
This initiative seeks to standardize cancer surveillance across the country, mirroring the success of the existing national cancer registry for children, which already achieves 100% coverage.
The national cancer registry utilizes a multi-source approach, drawing data from eight sources categorized into two groups. A decree issued on December 26, 2025, details the implementation and requires annual, free, and mandatory data transfers from producers, in compliance with the General Data Protection Regulation. The decree also outlines patient rights.
Launched on June 30, 2025, the national cancer registry (RNC) is under the responsibility of the Institut National du Cancer (INCa) and centralizes population data related to cancer epidemiology and care. The collection and processing of this data aims to improve cancer prevention, screening, diagnosis, patient care, and provide a foundation for research.
This isn’t simply an expansion of existing regional registries; the RNC’s multi-source approach combines, matches, and anonymizes information to cover the entire national territory. Improved data collection is crucial for understanding cancer trends and improving public health outcomes.
From Cancer Cohort to National Registry
The RNC’s development spans more than fifteen years. It began in 2011 with the creation of a cancer cohort, extracted from the French National Health Data System (SNDS), and gradually expanded to include data from regional registries.
On June 30, 2025, legislation tasked the INCa with establishing a national cancer registry [1]. Implementing regulations were published on December 26, 2025, defining implementation procedures, data sources, and update frequency [2].
Standardizing National Surveillance
Until now, cancer epidemiological surveillance in France relied primarily on approximately thirty regional registries (27 of which were subsidized by the INCa). While the data from these registries was high-quality, they covered only 20 to 24% of the adult French population. In contrast, the national registry for childhood cancer already achieves 100% coverage. National incidence, mortality, and survival estimates were therefore based on extrapolations from this partial coverage.
“The creation of the national cancer registry, which is fully aligned with the ten-year strategy for cancer control, marks a key step in providing France with a structured, reliable, and secure tool to support knowledge, prevention, and improved cancer care pathways,” said Didier Lepelletier, Director-General of Health, in a press release [3]. “Having robust and shared national data is essential for informing public health decisions in oncology and sustainably improving population health.”
|
Unlike the adult population, cancer surveillance in children already benefits from national coverage thanks to the RNCE, which combines data from the national registry of childhood leukemia and the national registry of solid childhood tumors.
Initially limited to children under 15 residing in mainland France, it expanded in 2011 to include the overseas departments and regions (DROM) and adolescents under 18 with cancer, borderline pathologies, or benign brain tumors.
Managed by the National Institute of Health and Medical Research (Inserm) within the Epidemiology of Childhood and Adolescent Cancers (Epicea) research team, this system helps to better understand the epidemiology (frequency, temporal evolution, geographical distribution), identify risk factors, improve care and follow-up for young patients, and support research in pediatric oncology.
|
The implementing decree defines four objectives:
- Collect cases annually and systematically across the national territory (including overseas departments and regions);
- Gather, match, and anonymize the collected data into a database;
- Conduct studies as part of its observation and evaluation missions for cancer control;
- Develop data available to contribute to research (studies and epidemiological surveillance of cancers).
What Data is Transmitted?
The decree specifies that data transfer is annual, free, and mandatory for all producers. It authorizes the utilize of eight sources, divided into two categories:
Unique Producers (Centralized Data)
- The cancer cohort from the SNDS;
- The database of the Center for Epidemiology on Medical Causes of Death (CépiDc-Inserm);
- The database of the Organization of Coordinated Emergency Surveillance network (Oscour);
- The database of the National Solidarity Fund for Autonomy (CNSA).
Multiple Producers
- Information systems of regional cancer screening coordination centers (CRCDC) for data from the three organized screenings (cervical, colorectal, and breast cancer);
- Regional registries;
- Information systems of healthcare facilities and laboratories, including multidisciplinary consultation meeting (RCP) reports, personalized care programs (PPS), and pathology and molecular genetics reports.
The system also allows for the integration of data from studies, cohorts, health data warehouses, research, clinical-biological databases, or pharmaceutical industry data – solely within the framework of specific validated projects.
The scope, however, remains focused and limited to data directly related to cancer.
“It is not a question of this registry collecting, for example, blood glucose results or other biological examination data. Only data directly inherent to cancer is concerned,” explains Claire Morgand, Director of Observation, Data Science, and Evaluation at the INCa, and responsible for the project.
Challenges of the Multi-Source Approach
The system identifies cancer cases based on several signals:
- Healthcare consumption related to cancer (SNDS data);
- Registration in a regional registry;
- Pathology reports mentioning cancer;
- Specific molecular genetics reports;
- Attendance at multidisciplinary consultation meetings (RCP).
However, given the multiplicity of sources, careful attention is needed to ensure that each case is counted only once, avoiding “false positives” from an isolated source or compensating for a lack of signal in another source.
Subsequently, triangulation of sources helps to confirm the case, date it, and qualify it (cancer location, invasive or in situ behavior, histological type, stage at diagnosis). Registry data is considered the “Gold Standard”: any registry case is a true case.
On areas covered by both regional registries and other sources, comparing data will help build and validate qualification algorithms. These algorithms are tested using standard criteria of sensitivity, specificity, and positive and negative predictive values. Once validated, the goal is to apply them to uncovered areas. Artificial intelligence methods will also be tested to optimize this qualification.
No Individual Information, But Collective Information
The General Data Protection Regulation (GDPR) generally requires individual information. For the RNC, a derogation is provided in view of the disproportionate efforts it would entail, risking compromising the achievement of the registry’s objectives.
In return, the INCa commits to providing collective information through several mechanisms (a specific section on its website, inserts in Cancer info guides, social media communications). A standard information note will be made available to healthcare facilities and professionals to inform patients during their care pathways.
Patient Rights
The decree guarantees several rights to those concerned:
- Right of access: to know what data is recorded in the RNC, understand its use, and request communication to verify its accuracy;
- Right to rectification: to request the correction of inaccurate or incomplete information in the registry;
- Right to limitation: to temporarily freeze the use of certain data, particularly in the event of a dispute;
- Right to define post-mortem directives: to specify, in advance, the fate of data after death.
Given the public health purpose and legal obligation, the right to object does not apply to the integration of data into the registry. However, it may still apply when data is reused for specific studies.
To exercise these rights, a form is available on the INCa website. Requests are processed within the legal deadlines provided for by the GDPR (one month, which may be extended by two months in case of complexity or a large volume of requests).
The chapter relating to the secondary use of health data will come into effect in March 2029. The INCa is already participating in working groups organized by the Digital Health Delegation (DNS) and the Health Data Hub to anticipate this deadline.
A dedicated platform will centralize the refusals of people who do not wish their data to be shared within the European space. The modalities of articulation between the current national system and the future European regulation are being defined.
Use for Clinical Research
Whether public or private, organizations wishing to access the data must follow the regulatory procedure. The project is submitted to the scientific and ethics committee (CSE) which assesses the scientific relevance and ethical compliance of the project. If the opinion is favorable, the file must then be validated by the Ethics and Scientific Committee for Research, Studies and Evaluations in the Health Field (CESREES) before obtaining authorization from the National Commission for Informatics and Liberties (Cnil) or demonstrating compliance with a validated reference methodology. Once these steps are completed, the data is made available by the INCa on its secure platform.
The average time is approximately six months between the submission of the protocol and the provision of data, which has a delay of approximately two years compared to the current date, necessary for its consolidation and validation. Data retention depends on its level of sensitivity: nominative or identifying data is kept for a maximum of 24 months in a highly secure environment, while pseudonymized data is kept for the last 20 years.
For insurers, only pseudonymized datasets are accessible, excluding any directly identifying data.
A Long-Term Collaborative Project
The RNC represents a major advance for epidemiological surveillance and cancer research in France, with its multi-source approach and national coverage making it a unique tool in Europe.
“This project must be extremely collaborative. It will progress as a function of a means-missions adequacy which is fundamental. It will grab time, because there is a major challenge of expertise and data qualification,” says Claire Morgand.
The projects are well underway. Collaborations are being established and the first data releases are expected in early 2026.
Based on the INCa webinar on January 21, 2026, on the national cancer registry.
