Directory of registries

Terminated clinical registry that monitored the epidemiology of gastrointestinal stromal tumours (GIST) as well as therapeutic approaches and treatment results in GIST patients in the Czech Republic and Slovakia.

start of the project: 05/2006

end of the project: 01/2019

A confirmed diagnosis of GIST, rather than the administration of a specific drug, was the basic criterion for a patient’s record in the registry. The registry monitored patients treated with all available treatment modalities (surgery and pharmacotherapy).

The project had been designed in cooperation with coordinators from research facilities who have had previous experience with GIST diagnosis and treatment. At the beginning, both retrospective data (patients diagnosed in the period between 2000 and 2006) and prospective data (patients diagnosed since the launch of the registry in 2006) had been entered into the registry. At later stages, only prospective records were collected.

Primary objectives of the project:

  • collection of epidemiological data on GIST incidence in the Czech and Slovak population,
  • assessment of detailed results of clinical and histopathological diagnosis, particularly the immunophenotypic and genotypic profiles,
  • assessment of data on treatment of GIST patients (surgical intervention, targeted therapies).

Secondary objectives of the project:

  • analysis of patients’ survival in relation to monitored clinical parameters,
  • assessment of data on patients' treatment response.

Other important information:

  • Expert guarantor: Czech Society for Oncology
  • Expert guarantors: prof. MUDr. Roman Kodet, CSc., MUDr. Zdeněk Linke (Czech Republic), prof. MUDr. Lukáš Plank, CSc., prim. MUDr. Jozef Šufliarský (Slovakia)
  • Funding: Novartis Ltd.
  • Partners: 13 cancer centres in the Czech Republic and in Slovakia