Czech National Cancer Registry (CNCR)

National Health Registers

PURPOSE OF DETECTION OF REQUESTED DATA

The purpose of the Czech National Cancer Registry (CNCR) is registration of cases of oncological diseases and periodic monitoring of their further evolution, i.e. aggregation of data, their verification, storage, protection and processing. CNCR provides aggragated data for statistical surveys on national as well as international levels, further also for epidemiological studies and health related research.

Data in CNCR serve also for support of timely diagnostics and therapy of neoplasms and precancerosis conditions, for monitoring of their prevalence, causal factors and social consequences.

Aggragated data are the basis for design, realisation and evaluation of preventive health care programmes and for estimates of necessary financial costs of securing complex oncological care. Anonymous individual data may be provided for epidemiological studies and health related research only in accordance with valid legislation and with the consent of the Council of CNCR.

CNCR is member of International Association of Cancer Registries (IACR) in Lyon, it collaborates with European Network of Cancer Registries (ENCR) and maintains contact with registers abroad. CNCRis an inseparable component of the complex oncological care.

We use data from CNCR in the publication Cancer Incidence, in the Data Presentation System and in some other publications. An external web portal called System for Visualizing of Oncological Data (SVOD) also uses data from CNCR.

RANGE OF DATA PROVIDED BY HEALTH ESTABLISHMENTS TO CNCR

CNCR is a nationwide population cancer registry that builds on the registry maintained in IHIS CR since 1976.

On January 1, 2006 significant changes were made in organisation of data collection for the CNCR. Changes were made in the contents of the data structure in CNCR, including the basic tool for data collection and entry, which is the newly regulated “Notification and therapy of malignant neoplasm”. At the same time, a significant change occurred in the definition of the subject that fill in the notification of a neoplasm. Now the duty of filling in the notification is shared by two  health care facilities:

  • health care facility that determines the diagnosis (fills in and transmits the notification within 1 month from determination of diagnosis)
  • health care facility responsible for therapy (fills in and transmits the notification within 8 months from determination of diagnosis).

This division allow to obtain fast operative survey of incidence of neoplasms in the Czech Republic and, on the other hand, to obtain a more complete and precise survey of therapy of these neoplasms.

CNCR is operated as a web application with central database. Regional workplaces of CNCR insert data to the registry by means of internet connection via secure https protocol. Access to the registry and assignment of user roles is authorised by the administrator of the registry.

1. Data connected with the state of health of the patients in relation to their disease and therapy

  • personal identification number
  • municipality of place of residence
  • citizenship in EU
  • social status (employee, self-employed, unemployed, not working, homeless, unknown)
  • status (living in family, single, unknown)
  • malignant neoplasm in family anamnesis
  • family anamnesis – number of neoplasms
  • smoking
  • main life occupation – verbally
  • migration – country
  • in what context detected (e.g. preventive examination, other examination, screening, autopsy)
  • date of 1st consultation with physician
  • date of determination of diagnosis

2. Data on the monitored disease

  • diagnosis (verbally), code of International statistical classification of diseases and related health problems in wording of the 10th revision (ICD-10)
  • diagnosis determined on the basis (clinically obvious, imag, examination method, surgery, histology, cytology, labor. examination incl. tumour markers, autopsy, DCO (data on tumour are not in health documentation but it is included in the Death Examination Document (further DED)))
  • laterality (left, right, both sides, inapplicable, unknown)
  • TNM classification for description of anatomic extent of disease, extent of primary tumour (T), absence or presence of metastases in regional lymph modes (N) and absence or presence of distant metastases (M)
  • pTNM classification – post-operative histo-pathologic classification is based on findings obtained prior to therapy supplemented or modified by other findings obtained in surgical operation and pathologic examination
  • clinical stage
  • disease (localised - advanced)
  • histology (verbally)
  • histology - topography code
  • histology – morphology code

3. Data on method of therapy of the disease

  • proposed therapeutic procedure (verbally)
  • malignant neoplasm not treated (state reason why)
  • surgery, surgical operation (verbally)
  • kind of surgery
  • date of surgery
  • removal of tumour (complete, residual tumour, tumour retained)
  • endoscopic operation
  • radiotherapy (verbally)
  • kind of radiation
  • form of therapy
  • date of beginning of radiotherapy
  • chemotherapy (verbally)
  • form of therapy
  • type of therapy
  • date of beginning of chemotherapy
  • hormonal therapy (verbally)
  • kind of therapy
  • date of beginning of hormonal therapy
  • other therapy (verbally)
  • kind of therapy
  • date of beginning of other therapy
  • number of tumours in the same patient
  • previous neoplasms
  • disease is considered to be late recognised
  • evaluation of procedure
  • conclusion (therapy terminated, suspended, continues, symptomatic, without therapy, unknown)

4. Data on death of patient

  • date on death of patient
  • diagnosis of disease that directly led to death (direct cause of death), diagnosis stated in DED
  • diagnosis of basic, main disease (primary cause of death), diagnosis stated in DED
  • diagnosis of other serious accompanying disease stated in DED
  • autopsy

5. Information on further monitoring of patient

  • Identification date on patient, including number of malignant neoplasm, date of determination of diagnosis, code of diagnosis in International statistical classification of diseases and related health problems in wording of the 10th revision (ICD-10), topography, morphology, TNM, pTNM
  • date of latest contact
  • status of patient (living, died)
  • therapy from the latest notification
  • kind of therapy
  • date of death
  • diagnosis of disease that directly led to death (direct cause of death), diagnosis stated in DED
  • diagnosis of basic, main disease (primary cause of death), diagnosis stated in DED
  • diagnosis of other serious accompanying disease stated in DED
  • changes
  • notification is made after several years

6. Information on health establishments taking part in therapy

Identification data of:

  • registering general practitioner
  • health establishment that performed surgical operation
  • health establishment that began radiotherapy
  • health establishment that began chemotherapy
  • health establishment that began hormonal therapy
  • health establishment that began other therapy
  • health establishment that will provide follow-up care

STATISTICAL UNIT OF INVESTIGATION

All diseases in the group of diagnoses:

  • malignant neoplasms (C00 - C97),
  • neoplasms in situ (D00 - D09),
  • neoplasms of uncertain or unknown behavior (D37 - D48) and
  • other specified diseases with participation of lymphoreticular tissue and
  • reticulohistiocytic system (D76.0)

detected in persons, disregarding gender and age, with state citizenship of the CR and in foreigners with permanent residence permit, detected clinically (including cases histologically or cytologically not verified) or detected at death.