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Transparency portal

 

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.

AJA

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.