Developing the monitoring of rare diseases
Our activities involve analysing the diagnosis and monitoring of rare diseases. These analyses are carried out by Belgian clinical biology laboratories and Belgian centres for human genetics.
With regard to clinical biology activities, we are tasked with
- proposing new refunds via the nomenclature, and
- selecting and acceptance of reference laboratories.
We also set up agreements between the National Institute for Sickness and Disability Insurance (INAMI/RIZIV) and certain foreign reference laboratories for analyses that are currently carried not out in Belgium.
Within the context of genetic analyses, we are tasked with setting up a program of External Quality Assessments (EQAs), targeting certain tests performed by Belgian centres for human genetics.
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Clinical biology analyses:
Between April 2015 and December 2016, we:
- compiled an inventory of non-genetic analyses of medical biology prescribed in Belgium in connection with the diagnosis and monitoring of rare diseases that were not eligible for reimbursement
- evaluated the clinical relevance of these analyses, in collaboration with a group of Belgian experts
- proposed financing arrangements for the selected analyses due to their significant clinical relevance (nomenclature codes, selection and financing of future Belgian reference laboratories, or establishment of agreements with foreign laboratories).
Once these proposals had been approved by the INAMI-RIZIV and the Office of the Minister for Social Affairs and Public Health, we began the implementation phase. In 2017 this has resulted in proposals for new nomenclature codes being submitted to the Commission for Clinical Biology and a call for candidates for the selection of reference laboratories. The selection of reference laboratories and the establishment of an agreement with foreign laboratories will take place in 2018.
Analyses of Human Genetics:
Between December 2014 and May 2016, we evaluated the current state of the quality system within Belgian human genetics centres. On this basis, proposals were made to improve certain quality aspects of the tests. In particular, we proposed introducing a new EQA programme organised by Sciensano, and dedicated solely to genetic analyses conducted in Belgium.