A cohort study
The FCCSS (French childhood cancer survivor study) is a cohort study, which means it is based on the follow-up of a large number of people over time (several years or several decades) in order to observe the occurrence of events and identify the risk factors associated with those events.
The study is a cohort of adults treated before 2000 for cancer when they were children or adolescents, in more than thirty paediatric oncology services in France.
The data collection is now in progress. The FCCSS includes data of archives of both cancer centres and cancer registries.
The aim is to include 18 000 members in the cohort. The FCCSS includes patients treated for solid tumours or lymphoma. The patients treated for leukaemia are followed within the LEA cohort study.
What kind of information is collected?
In the FCCSS study, we collect accurate and complete data on treatments received during childhood or adolescence, using medical records from cancer centres: surgery, chemotherapy, hormonal therapy and radiotherapy.
The postal addresses of survivors are extracted from the National Directory of Inter-schemes beneficiaries of Health Insurance (RNIAM), which is powered by the French National Health Insurance organizations (CNAM, RSI, and MSA). This research was authorized in 2014 by a decree of the “Conseil d’Etat”.
A questionnaire is then sent to survivors by mail or on the internet, in order to gather information on their medical, social and economic outcomes.
Data on hospitalisations and healthcare use (e.g. drugs prescribed by a doctor) are also collected from the French social security system database (national health insurance system). This cooperation with the French health Insurance has been authorised since 2014 by the decree of the “Conseil d’Etat”. These data complement the information reported by the participants in the questionnaire.
In recent years, saliva and blood samples of some participants have also been collected. These samples are used to conduct biological studies aimed at explaining why some people develop late effects whereas others do not.