The transparency portal, as defined by the CNIL, allows you to become aware of research projects conducted by the EPICEA team that utilize information gathered within the framework of the National Registry of Childhood Cancers.
These works, whether in collaboration with other researchers or not, are essential for improving research on childhood cancers.
Each project is summarized in accordance with the General Data Protection Regulation (GDPR) as defined in Articles 12, 13, and 14.
Each summary allows you to understand the objectives pursued by the research, the population involved, and the data used by it.
You also have the identity of the person responsible for the study (principal investigator) whom you can contact on this site via ourcontact form, to exercise your rights of information, access, opposition, rectification, and erasure (“right to be forgotten”), and limitation of processing, under personal data protection.
The main objective The main objective is to provide knowledge on the epidemiology of cancers in children, adolescents, and young adults (AYA) using the INCa Cancer Data Platform, notably to describe the distribution of cases by types over the period 2011-2019 as well as the care trajectories of AYA cancer patients across both rural and urban areas.
The secondary objective is to assist the National Registry of Childhood Cancers (RNCE) in improving the completeness of cases in the 15-17 age group by identifying unknown cases from the INCa Cancer Data Platform (PDC).
Patients concerned: all patients in the Cancer Data Platform (PDC) who were diagnosed with cancer for the first time between the ages of 15 and 24 in the period 2010-2019, population born between 1986 and 2004.
Data used:
Data contained in the INCa Cancer Data Platform: gender, month and year of birth, municipality of residence (postcode), date of care, care locations, cancer diagnosis coded according to the International Classification of Diseases (ICD-10), month and year of potential death.
Data collected by the RNCE: gender, month and year of birth, municipality of residence at diagnosis, date of cancer diagnosis, type of cancer, nature and date of first treatment, nature of treatment, treatment facility.
Method: A matching between the data from the RNCE and the PDC is carried out firstly to identify and eliminate prevalent cases that had a first cancer before 2010 and secondly, to evaluate the quality of data collection for 15-17 year olds in the RNCE since 2011.
The objective of this international study is to investigate the distribution of tumor stage at diagnosis for 6 pediatric solid cancers and to compare the stages at diagnosis and survival by stage for each tumor studied across the various participating countries.
Patients concerned: All patients included in the RNCE during the period 2014-2016 with one of the following types of cancer: medulloblastomas, neuroblastomas, nephroblastomas, osteosarcomas, Ewing’s bone tumors, rhabdomyosarcomas.
Data collected by the RNCE : gender, year of birth, year of cancer diagnosis, age at diagnosis, type of cancer, previous cancer and year, examinations performed for cancer staging, cancer stage, type of treatments performed, potential relapse, vital status and time since diagnosis, cause of potential death.
The objective of COHOPER is to monitor individuals who have had cancer in childhood in order to assess their risk of relapse, sequelae, and second cancer, and more generally their health status at a distance from their illness. The aim of COHOPER is to monitor individuals who have had cancer in childhood in order to assess their risk of relapse, sequelae, and second cancer, and more generally their health status long after their illness.
Patients concerned: all individuals listed in the National Registry of Childhood Cancers (RNCE) for a cancer diagnosis since 2000.
Data used:
Data collected by the RNCE: gender, date of birth, municipality of birth, date of cancer diagnosis, department of residence, type of cancer, treatments received (date, type, and response to treatment), health events (progressive relapse, relapse, second cancer), date of last news, vital status
Data collected directly from the individuals themselves, who have agreed to respond to an online questionnaire regarding their health, medical follow-up, lifestyle habits, and quality of life.
Data contained in the National Health Data System (SNDS) obtained by matching with data from the RNCE to identify secondary health events: relapses, second cancers, sequelae, and secondary pathologies.
The objective is to compare the distribution of cancer stage at diagnosis before and during the COVID-19 pandemic in the general French population to determine if patients were managed at more advanced cancer stages during the pandemic.
Patients concerned: All patients residing in France with cancer occurring before the age of 18 during the years 2018 to 2020.
Data used: Data collected by the RNCE: gender, date of birth, date of cancer diagnosis, circumstances of diagnosis, type of cancer, cancer stage, date of first treatment, nature of treatment, treatment facility, department of residence.
The objective is to assess whether the COVID pandemic has led to the management of cancer patients at more advanced stages than before the pandemic. The distribution of stage at diagnosis will be compared before and during the COVID-19 pandemic in the general French population.
Affected Patients: All patients residing in France with cancer diagnosed before the age of 18 during the years 2018 to 2020.
Data Used: Data collected by the RNCE: sex, date of birth, date of cancer diagnosis, circumstances of diagnosis, precise diagnosis, cancer stage, date of first treatment, nature of treatment, facility where treatment was performed, department of residence.
The objective is to describe the distribution, incidence, and net survival of cancers in Adolescents and Young Adults (AYA) (15-24 years) and young adults aged 25-39 years in France according to the new international classification, using data from the Francim network (reference data established for 24% of the territory).
Patients concerned: Individuals aged 15 to 39 who were diagnosed with cancer and/or central nervous system tumor between January 1, 2000, and December 31, 2018, and residing at the time of diagnosis in one of the 18 departments of metropolitan France covered by a general cancer registry (Calvados, Charente, Charente-Maritime, Doubs, Gironde, Hérault, Isère, Loire-Atlantique, Manche, Lille and its suburbs, Bas-Rhin, Haut-Rhin, Deux-Sèvres, Somme, Tarn, Vendée, Vienne, Haute-Vienne, Territoire de Belfort).
Data used: Data collected by general cancer registries: gender, date of birth, date of cancer diagnosis, department of residence, type of cancer.
The objective is to study the evolution of the incidence of central nervous system tumors in children under 15 years old in metropolitan France, both overall and for the most common types (gliomas, embryonal tumors), and by location.
Patients concerned: All children under 15 years old residing in France who have been diagnosed with malignant or benign Central Nervous System tumors between the years 2000 and 2020.
Data used: Data collected by the RNCE: gender, date of birth, date of cancer diagnosis, diagnostic imaging exams, histological confirmation and review, immuno-histochemistry and/or molecular biology data, tumor grade and size, certain predisposition syndromes (neurofibromatosis).
The objective of the GEOCAP-BIRTH program, based on the National Registry of Childhood Cancers (RNCE), is to study the influence of environmental exposures on the risk of childhood cancer. These works rely on the address of the cases at the time of their birth and on their proximity to sources of exposure or in relation to an exposure mapping.
Patients concerned: all children under 15 years old diagnosed with cancer or benign brain tumor since 2010, residing in metropolitan France at the time of diagnosis.
Data used: Data collected by the RNCE: gender, date of birth, date of cancer diagnosis, type of cancer coded according to the International Classification of Diseases for Oncology (ICD-O), department of residence, precise address of residence at birth geocoded according to geographical coordinates (longitude/latitude).
The objective of the GEOCAP-DIAG program, based on the National Registry of Childhood Cancers (RNCE), is to study the influence of environmental exposures on the risk of childhood cancer. These works rely on the address of the cases at the time of diagnosis and their proximity to sources of exposure or in relation to an exposure mapping.
Patients concerned: all children under 15 years old diagnosed with cancer or benign brain tumor since 2002, residing in metropolitan France at the time of diagnosis.
Data used: Data collected by the RNCE: gender, date of birth, date of cancer diagnosis, type of cancer, department of residence, precise address of residence at the time of diagnosis geocoded according to geographical coordinates (longitude/latitude).
The RNCE participates in international research working groups in cancer epidemiology, and its anonymized data are integrated into publications from international programs.
ENCR: European Network of Cancer Registries – https://www.encr.eu/
EUROCARE: Survival of Cancer in Europe – https://www.eurocare.it/
CONCORD: Global Cancer Survival – https://csg.lshtm.ac.uk/
IARC: International Agency for Research on Cancer:
- IICC: International Incidence of Childhood Cancer – https://iicc.iarc.fr/
- ACCIS: Childhood Cancer Information System – https://accis.iarc.fr/
- CS: Childhood Cancer Survivor Prevalence and Second Cancer Risk Estimation – https://criccs.iarc.who.int/
CLIC: International Consortium on Childhood Cancers and Leukemias – https://www.clic.ngo/