In November 2015, a “Rare Diseases Working Group (RDWG)”, composed of clinical pathologists with a particular expertise in rare diseases and one Sciensano scientific moderator, was set-up by the Belgian Commission on Clinical Pathology.

Between December 2015 until June 2016, the RDWG met 2 to 5 times per month in order to discuss the usefulness, clinical relevance, limitations and costs of the analyses for which information was collected during the survey. The goal was to evaluate the feasibility of their financing and identify analyses which should be prioritized for reimbursement. Particular attention was paid to tests for which there was disagreement about the clinical utility. The goal was to sort out whether discrepancies of opinions were due to evidence-based disagreements over the use of the analysis in clinical practice or to differences in laboratories’ functioning.

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