The Central Registry of Rare Diseases is a database containing certain basic data of all Belgian patients with a rare disease. At present, data is collected only at the genetic centres, but this will later be extended to other centres in order to gain a complete overview.
The term "rare diseases" is used to refer to diseases that occur in fewer than 1 in 2,000 people. The field of rare diseases is very complex due to the large number of rare diseases (up to 8,000) and the remarkable heterogeneity in these diseases. This complexity and, in particular, the rare nature of the diseases lead to problems in terms of diagnosis, care, treatment and research.
You can find more information about rare diseases here.
Why do we need a Central Registry of Rare Diseases?
Healthcare policy in relation to rare diseases is severely impeded by a lack of epidemiological data on these diseases, which means that estimates of the size of the patient group vary widely. The European Commission estimates that 6 to 8% of people suffer from a rare disease, which amounts to 660,000 to 880,000 Belgians. According to the Fund for Rare Diseases and Orphan Drugs, around 60,000 to 100,000 of these people require special care as a result of a rare disease.
A registry is a valuable source of information for patients and patient organisations, care providers, researchers and authorities, and can contribute to improvements in several areas (including epidemiology, care policy, quality assurance, research, administration).
Who has commissioned the Central Registry of Rare Diseases?
The Central Registry of Rare Diseases was set up at the request of the European Commission and the Belgian Minister of Public Health by Sciensano. The NIHDI is funding this project.