Context and objectives
The COHOPER cohort allows systematic epidemiological surveillance of the people who had a cancer in childhood. It is based on records of the certified National Childhood Cancer Registry (RNCE). It was set up in 2011 following recommendations by the French National cancer Institute (INCa) in the framework of the 2nd French Cancer Plan, in collaboration with the SFCE. It is designed to be exhaustive and permanent.
The main objective of the COHOPER cohort is to evaluate long term risk of relapse, second cancer, sequelae and, more generally, state of health of former patients away from their diagnosis and to improve the management of childhood cancer.
COHOPER includes 5 years of follow-up data for all young patients diagnosed with cancer since 2000 (currently approximatively 25 000 people) [statutory approval CNIL n°998198 – DR-2013-198]. In line with the RNCE, it includes all children (0-14 years) living in mainland France, and, since year 2011, also collects data on adolescents (15-17) and those living in French overseas departments.
Up to year 2010, the registry covered all children (0-14 years) residing in mainland France. Since 2011, it also includes patients living in French overseas departments, and adolescents aged 15-17 years at diagnosis.
Information on treatment are collected by the registry team from the paediatric haemato-oncology records. For radiotherapy, X-ray doses are provided since 2013 by the PediaRT radiotherapy database, centralised at the Léon Bérard hospital centre.
The systematic follow-up is mostly based on information extracted from the national health insurance database, by secured linkage with the RNCE database. This process does not require active follow-up. Algorithms are used to detect possible secondary events and adverse effects of treatments.
Health and quality of life questionnaires are also used to cover other aspects of health.
Legal and ethical aspects
All data are collected, stored, and analysed with the strictest respect of legal requirements for data security, confidentiality and anonymity. The data will allow researchers of all specialities to better understand the long-term effects of cancer treatment, and improve childhood cancer care.
COHOPER is labelled “Investment for the future” and as such secured access to de-identified data will be possible for all research projects, provided acceptance by the scientific committee and collaborations with French teams.