The German Childhood Cancer Registry (GCCR) was founded in 1980. It is hosted by the Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI) at the University Medical Center of the Johannes Gutenberg University Mainz. It registers cancer cases for all children under 15 years (since 2009: under 18 years) in all of Germany. Since 1991 the former GDR is included.
The completeness all over Germany is about 95% and thus conforms to international requirements for an epidemiological registry. About 1800 cases are reported per year from the paediatric oncology units. These units are affiliated at the GPOH (Society for Paediatric Oncology and Haematology). Registration and information in the GCCR and the therapy optimization studies of the GPOH are closely linked.Meanwhile about 45,000 cases are registered, offering a reliable basis for assessing regional differences, trends and forming a basis for epidemiological studies. Due to the large numbers and the completeness of registration, the results of studies are representative for Germany. The spatial completeness permits assessing the possibility of local clusters.
The last decades saw an impressive progress in therapy, which can be demonstrated by the registry data. This leads to an increasing emphasis on investigating and avoiding adverse long term effects. The GCCR provides a basis for this by intensifying its long-term follow-up and by registering second neoplasms as completely as possible.
Since 2007 reporting all patients under 18 to the GCCR is mandatory for all paediatric oncology units. On this basis, the extension to ages 15-17 has been introduced since 2009.
The methods, routine analyses and current research are available in the annual reports [here...].