The database of childhood cancers in the Czech Republic is based on:
- data managed by the Institute of Health Information and Statistics of the Czech Republic (IHIS); these data are collected within the National Health Information System (NHIS) and National Health Registers,
- data from clinical databases of childhood cancer patients.
Data from the Czech Republic
- The Czech National Cancer Registry (CNCR) is a nationwide population-based registry aimed at recording cancer cases and their continuous follow-up. Cancer registration is enshrined in the Czech legislation and is obligatory. CNCR data from 1994 onwards were used for the analyses.
- Clinical databases of childhood cancer patients are internal databases maintained at two main centres that provide care to childhood cancer patients (Department of Paediatric Haematology and Oncology at the University Hospital in Motol, Department of Paediatric Oncology at the University Hospital Brno). The databases contain basic diagnostic and clinical data on childhood cancer patients; the latest available data are from the period 1994–2016.
- The National Register of Hospitalised Patients (NRHOSP) is a nationwide population-based registry containing records on persons who were hospitalised in inpatient wards, and who were discharged from hospital in the monitored period. NRHOSP was used to look up data from recent years.
- The Death Certificate is the basic source of information on each death. The examining physician fills the certificate immediately after his/her examination of the deceased person. Apart from the basic sociodemographic characteristics, the physician also records the succession of causes leading to death (coded by ICD-10); data are available up to 31 December 2016.
- Demographic data from the Czech Republic – all demographic data on the monitored population from the period 1994–2016 were drawn from data provided by the Czech Statistical Office (CZSO).
Data on childhood cancers, which are recorded in the Czech National Cancer Registry, were validated using clinical databases of childhood cancer patients and subsequently combined with data from the National Register of Hospitalised Patients and with data from death certificates. These validated data were used to establish the incidence and survival of childhood cancer patients. Data from death certificates were used to establish long-term mortality trends.
An in-depth check of data on childhood cancers was carried out in 2017. In cooperation with cancer centres, missing information on topography or morphology was completed especially in older records, thus classifying individual cases more precisely into diagnostic groups and subgroups, in accordance with the International Classification of Childhood Cancer, 3rd Edition (ICCC-3). In some cases, older diagnostic codes were replaced according to a more recent methodology.
International sources of data
- incidence data: International Incidence of Childhood Cancer (IICC)
- mortality data: European Cancer Information System (ECIS)
- survival data: CONCORD-3, an international comparative study