Terminated parametric collection of basic clinical data on paediatric cancer patients, interactive analytical reports.
start of the project: March 2000
end of the project: May 2018
Childhood cancers are classified among rare diseases as their incidence rates are orders of magnitude lower than cancer incidence rates in adults. Childhood cancers involve a wide range of diseases: there are more than 70 diagnoses according to the International Classification of Diseases (ICD). Although childhood cancers are rare, they are the second leading cause of death among children (after injuries). In the Czech Republic, treatment of paediatric cancer patients is concentrated in two specialised centres:
On top of that, treatment of haematooncological patients is partially ensured by health care facilities in Ostrava, Olomouc, Plzen, Hradec Kralove, Ceske Budejovice, and Usti nad Labem. In accordance with the Council Recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02), the centres of University Hospital Motol in Prague and University Hospital Brno have established and maintained a database of diagnosed and treated paediatric cancer patients.
The portal is intended for health care professionals, aiming to improve their awareness of childhood cancers and to promote their education in this area. The target groups involve paediatricians and non-specialised paediatric departments of health care facilities, professionals in both basic and applied research, as well as civic associations of patients and their family members.
The portal provides not only basic information on individual diagnostic groups of childhood cancers, but also interactive analytical reporting tools, which inform the users of:
The presented analytical outputs and reports are based on all available data sources in the Czech Republic. In particular, these involve data from the clinical database of childhood cancers in the Czech Republic, which is compared to data from participating centres and supplemented with some administrative data. These records are also coupled with data from the Death Records database, thus ensuring high-quality data needed to perform survival analyses. Data on secondary cancers is acquired from the Czech National Cancer Registry. Validated data is processed by an analyst, and the current design of on-line reporting tools was developed in cooperation with expert guarantors.