Overview
The purpose of the National Oncology Register (hereinafter referred to as NOR) is the registration of oncological diseases and periodic monitoring of their further development, i.e. data collection, verification, storage, protection and processing. NOR provides summary data for statistical overviews at both national and international levels, as well as for epidemiological studies and health research. NOR is a nationwide population register that follows on from the monitoring of neoplasms in the population of the Czech Republic introduced in the 1950s, and as a population register of records of individual neoplasms, the ÚZIS of the Czech Republic has been operating since 1976.
NOR data are also used to support early diagnosis and treatment of neoplasms and pre-cancerous conditions, to monitor trends in their occurrence, causative factors and social consequences. At the population level, the results of the treatment of neoplasms are also evaluated in the form of a survival analysis.
The transfer of data to NOR is governed by applicable legislation, in particular the following legal regulations:
- Act No. 372/2011 Coll. , on health services and the conditions for their provision (Act on Health Services), as amended
- Decree No. 373/2016 Coll. , on the transfer of data to the National Health Information System, including attachments
- Act No. 110/2019 Coll. , on the processing of personal data, as amended later
- Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons in connection with the processing of personal data and on the free movement of such data and on the repeal of Directive 95/46/EC (General Data Protection Regulation)
The following regulations of the Department of the Ministry of Health of the Czech Republic also apply to the transfer of data to NOR:
- NZIS methodology (formerly NZIS Binding Guidelines - Guidelines for the content of the data structure).
- Data standard of the Ministry of Health of the Czech Republic.
- The framework definition of the concept of the organization of NOR data collection is given in the Bulletin of the Ministry of Health of the Czech Republic, volume 13, year 2017 of 20 December 2017, in the section Organization and quality assessment of oncology care in the Czech Republic.
Demographics
Dataset
Anonymous individual data may be provided for epidemiological studies and medical research in accordance with applicable laws and with the consent of the NOR administrator (ÚZIS CR) and the NOR Council (the expert advisory body of the NOR administrator).
Contact
Palackého náměstí 4, PO BOX 60, 128 01 Prague 2
E-mail: uzis@uzis.cz