Research
Since it was founded the Belgian Cancer Registry's main task involves registering all new cases of cancer in Belgium. Each day the Registry also takes the utmost care to diligently collect and store relevant information related to newly discovered cancers. These years of effort have resulted in a database that can be considered complete for Flanders since 1999 and for Belgium as a whole since 2004. The database constitutes an invaluable source of information and has formed the basis for research conducted by the Belgian Cancer Registry for several years. As a result of the Health Act of 2006 the Belgian Cancer Registry has obtained further access to a selection of health information supplied by health insurance funds. Linking these data with the Cancer Registry's own database has provided a boost for internal research projects as well as those conducted in association with other organisations.
Investigating its own data primarily aims for a more detailed analysis of the registered data. For the majority of cancer cases supplied our database possesses not only standard variables but also protocols from the pathology laboratories. The available protocols for certain types of cancer are regularly examined in detail, which can result in the registered information being refined. Moreover the registered data can also serve as a starting point for detailed descriptions of a number of tumour and patient characteristics per tumour type. Lastly, the database also serves as the basis for survival analyses, in which the 'Kruispuntbank' (Crossroads Bank) is consulted to ascertain the vital status of the registered patients.
As already mentioned, the possibility of linking with a selection health data of the registered patients, gives rise to new research possibilities. This heath data, of patients registered in our database, consists of all relevant information about the clinical operations performed in a time frame of a year prior to and up to and including three years after the incidence date. Once these immense databases are ready for use, they could serve as a basis for ascertaining, for example, the most common diagnostic and therapeutic treatments or methods per tumour type. The Belgian Cancer Registry's database must be used for purposes of verification, where possible.
In addition to research on its own initiative, the Belgian Cancer Registry conducts research in association with external parties. These external parties mainly comprise other organisations involved in the field of public health, such as
Requests for joint research projects may also be submitted by experts in the field, ranging from individual doctors to professional associations or hospitals.
For each research project in which the Cancer Registry uses personal data, it requests permission from the 'Privacy Commissie' (Privacy Committee) before the project begins. Once permission has been obtained, the Belgian Cancer Registry uses exclusively coded data. This avoids any direct or indirect reference to, or possible identification of, any persons. This allows the Belgian Cancer Registry to also respect the privacy of patients, support workers and care institutions in its research work.
The Belgian Cancer Registry's research component is still under full expansion. The Registry is convinced that optimal use of its registered data, combined with other information accessible to the Registry, can lead to extremely valuable research. The emphasis is consistently on cooperation with experts in the field to maximise the clinical relevance of the work delivered.
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