Since January 1, 2026, France has implemented a national cancer registry, established by the law of June 30, 2025, and coordinated by the French National Cancer Institute (INCa). This system aims to record diagnosed cancer cases across the country by centralizing reliable, harmonized, and regularly updated data.
Until now, epidemiological cancer surveillance relied on local registries covering between 20% and 24% of the population, depending on cancer type, as well as on comprehensive registration of childhood cancers. While these tools enabled significant progress, their partial coverage nevertheless limited the overall national perspective.
The new national registry aims to improve case collection coverage across the entire territory and strengthen the overall understanding of the situation. Its operation relies on national coordination involving INCa, healthcare institutions, existing registries, and research teams. This collaborative organization is designed to ensure the quality, reliability, and consistency of the collected data.
In practical terms, the registry will allow for more precise identification of populations affected by cancer, age at diagnosis, tumor types, and treatment pathways. It will also provide a more detailed understanding of care pathways and disease progression over time. By providing researchers and public health authorities with reliable, structured, and consolidated data, it will become a major lever for better guiding public policies and strengthening the national cancer control strategy.
A major step forward for research and public policy management
Each year, nearly 400,000 new cancer cases are diagnosed in France. Overall, more than three million people are currently living with cancer or have been affected by it in the past. These figures highlight the scale of the public health challenge and the need to rigorously structure the production and organization of knowledge.
The national registry aims to improve the measurement of cancer incidence — meaning the number of new cases — as well as prevalence. This consolidated view will help anticipate needs, adapt resources, and evaluate the impact of both prevention strategies and treatments.
It will also enable more precise monitoring of changes over time: the progression or decline of certain cancers, the impact of therapeutic innovations, and improvements in survival rates. By making data harmonized and comparable nationwide, the registry becomes a true tool for evaluating public policies.
Another major challenge is identifying territorial disparities. Data analysis may reveal potential inequalities in access to early diagnosis, specialized treatments, or clinical trials. This monitoring capacity is essential to ensure more equitable access to care throughout the country.
For research, the impact is significant. Robust data supports the development of clinical and translational studies, helps identify specific patient subgroups, and refines clinical trial protocols. It also contributes to more efficient allocation of public funding by highlighting scientific priorities. Structured data thus becomes a strategic driver of innovation.
Particularly crucial challenges for childhood cancers
While the national registry benefits all patients, it is particularly important for pediatric oncology.
Cancers affecting children, adolescents, and young adults are considered rare, with around 2,500 new cases each year in France. However, they remain the leading cause of death by disease among children. Their rarity does not mean uniformity: they include many subtypes, often highly specific from a biological and genetic standpoint, and distinct from adult cancers.
In this context, consolidating data at the national level is essential. For rare diseases, every case matters. Bringing together information makes it possible to reach a critical mass needed to analyze trends, better characterize rare subtypes, and understand the specific mechanisms of these diseases.
The registry is also essential for long-term follow-up. In pediatric oncology, the challenges go beyond immediate survival. They also concern treatment-related side effects, late effects, and the quality of life of children who become adults. Having reliable long-term data helps improve treatment protocols and reduce treatment toxicity.
Finally, identifying territorial disparities is a key issue. All children must have access to specialized care and therapeutic innovations, regardless of where they live. A national registry can help highlight these gaps and guide corrective actions.
Turning knowledge into concrete progress for children
For Imagine for Margo, the launch of this registry represents a structural advancement that should be welcomed. It strengthens the foundations of a more coherent national strategy based on robust and shared data.
However, this momentum must be accompanied by strong and specific consideration for pediatric cancers. Rare and complex, they require dedicated attention both in data analysis and in research funding priorities.
Data only has value if it leads to concrete progress. Better understanding childhood cancers must help better target scientific needs, accelerate clinical trials, and develop more suitable and less toxic treatments. This is one of the reasons why the association supported the SACHA project, which helped secure access to medications for young patients outside of clinical trials — a program that is now being adopted internationally.
This new registry implies a collective responsibility. Institutions, researchers, healthcare professionals, policymakers, and associations must ensure that this data is fully mobilized to serve children, adolescents, and young adults affected by cancer.
For the past fifteen years, Imagine for Margo has been working to accelerate research and ensure equitable access to innovation for children. The national registry can become a key tool to help cure more children and improve outcomes for the young fighters battling the disease.
Every scientific breakthrough begins with collective commitment. If you would like to take action alongside us to accelerate research and improve care for children with cancer, support Imagine for Margo.