RNCE

The French National Registry of Childhood Cancers (RNCE)

The registry records all new cancer cases diagnosed in mainland France residents under age 15 years (since 1990 for haematological malignancies, since 2000 for solid tumours). Since the 1st January 2011, registration has been extended to include adolescents up to the age of 17 years, residing in mainland France or in overseas departments.

Registration includes data on diagnosis and treatment. RNCE monitors trends of remission rate, as well as the occurrence of potential late adverse events related to the disease or treatments.

It answers several goals of the French national Cancer plan.

Key numbers

Definitions and objectives

A registry is defined by the French Registry Evaluation Committee (CER), as a structure carrying out continuous and exhaustive collection of personal data related to one or several health events, within a geographically-defined population, for research purposes and public health surveillance, conducted by skilled team.

Our objectives are:

Health monitoring and surveillance

• To estimate the reference incidence rates of childhood cancers in France and their distribution by histological type.
• To estimate population-based survival probabilities.
• To monitor spatial and temporal variations of incidence and survival.

Aetiological research

The registry has a central role in research on childhood cancer risk factors through its exhaustive database and precise diagnosis information, which is coded to international standards.

• Ecological studies focus on the influence of local determinants on cancer incidence, such as exposure to natural ionizing radiation, proximity to some sites like nuclear sites or other demographic factors.

• Population-based case-control studies analyse multiple factors, such as the role of individual and familial medical history, environmental exposures (tobacco and alcohol in utero, passive tobacco during childhood, parents’ professional exposures, household environment, etc.).

These studies are conducted within INSERM-1153 unit, Team 7 (EPICEA).

Contribution to health services evaluation

• Collecting data on patient management enables us to assess the patient’s pathway of care.

• The COHOPER cohort study, one of the components of the French Childhood Cancer Observation Platform (CCOP), allows monitoring of general health condition and quality of life in people who were diagnosed with cancer in childhood.

Target population and inclusion criteria

The registry includes all children newly diagnosed with cancer, younger than 18 years (since 2011), and whose usual residence is in mainland France or overseas departments at the time of diagnosis.

RNCE made up of:

• The French National Registry of Childhood Haematological Malignancies, which records all diagnoses of haematological malignancies since 1990.
• The French National Registry of Childhood Solid Tumours, which records all solid tumours cases since 2000.

For each new cancer case, information is collected by clinical research associates in all paediatric and adolescent haemato-oncology centres. The data are anonymised before statistical analyses. Descriptive statistics are published by national health agencies (Santé Publique France, Institut National du Cancer) and by the International Agency for Research on Cancer (IARC), which analyses international data.