Overview of Belgian Health Data registries
Finding Belgian Health Data Registries
• Most Belgian health registries can be found at https://fair.healthdata.be/sources/metadata_projects
Examples of Belgian Health Data Registries:
- The Belgian Cancer Registry, as mentioned before, hosts a large biobanks network (BVT), but also gathers all cancer-related data in Belgium. By Belgian law, all hospitals are obliged to register new cancer diagnoses. More information can be found on their website, https://kankerregister.org/
- The Central Registry of Rare Diseases, set-up on the request of the European Commission and the Belgian Minister of Public Health, gathers data of all Belgians with rare diseases. Patients, health care professionals, researchers and health authorities can all use this registry as source of information on rare diseases.
- The Belgian Neuromuscular Disease Registry is a registry managed by Sciensano, bringing together data from 7 neuromuscular reference centres. The registry aims to promote scientific research, but also to inform the Belgian health authorities.
- The Belgian Cystic Fibrosis Registry (BCFR) gathers all data related to Belgian Cystic Fibrosis patients from one of the CF-reference centres in Belgium. Since 2006, the BCFR is managed by Sciensano
Access to Health Data Registers in Belgium
The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health