Childhood cancer registry

Summary

The specifics of childhood tumours have over time necessitated an age-specific classification in order to reliably and reproducibly describe and analyze the process and outcomes of childhood cancer treatment. Moreover, the advances in understanding the biology of tumours in children and young adults has brought about the need for further related changes to classification methods, which are currently probably best-reflected in the international standards of the ICCC (International Classification for Childhood Cancer) [1]. As is the case with adults, there has been a statutory requirement in force since 1951 [2] to report any new occurrence of paediatric oncological disease to the National Cancer Registry (NCR), using the ICD-O (International Classification of Diseases for Oncology) [3].

The need for a qualified and reliable interpretation of clinical and laboratory data – such as the ICD-O, ICCC and other individual diagnosis-specific classification systems – has in turn created the need for a reliable and user-friendly information system (IS) which would allow for a flexible response to current developments and automatic data transfer to the NCR and a subsequent analysis of this. Thanks to the cooperation between the University Hospital’s Department of Paediatric Oncology at Masaryk University’s Faculty of Medicine and the Institute of Biostatistics and Analyses (IBA), an IS using both classification standards was developed.

Compared to the NCR, the spectrum of collected and analyzed data was extended according to the needs of the clinics, and so it is possible to use the IS to obtain structured information such as newly-diagnosed patients, the incidence of various types of tumours in children in different areas of the Czech Republic, individual diagnostic groups, therapeutic protocols used, and treatment outcomes and survival curves for overall survival and disease-free survival rates. Upon successful verification of the information system’s initial studies in clinical conditions, it was subsequently implemented at the Department of Paediatric Haematology and Oncology, Motol University Hospital in Prague.

The IS has proved its worth in clinical conditions, and is an invaluable source of reliable data for both oncologists and researchers, as well as for health care financing..

Key words:
information system, paediatric oncology, oncology reporting, classification of tumours