The term “rare diseases” is used to refer to diseases that occur in a relatively small number of people. They often involve specific problems because of the fact that they are rare. You can read more about this here.
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. 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).
All the information on the data collection for this Central Registry of Rare Diseases can be found here. The data that are gathered contains the identification details of the genetic centre and the treating physician (NIHDI-numbers), some demographic data about the patient and details of the diagnosis:
- The demographic data that are gathered about the patient includes: encoded national register number, gender, date of birth, if applicable the date of death, and the zip code for the place of residence.
- In terms of the diagnosis, various data are requested:
- the date of the first symptoms of the rare disease (defined as the date of the first consultation with a physician for this reason)
- the date of the first consultation at the specialist healthcare institution
- the date the current diagnosis was made
- whether this diagnosis is provisional or definitive
- the code for the disease within an existing disease classification system
- the base on which the diagnosis was made (e.g. based on clinical symptoms, genetic test, biochemical test etc.).
For any audience, Orphanet is the reference portal for information about rare diseases and orphan drugs. The aim of Orphanet is to help to improve diagnosis, care and treatment of patients with a rare disease.
The Central Registry of Rare Diseases has permission from the Belgian Privacy Commission to gather data. Approval (authorisation granted in deliberations no.13/105 of 22/10/2013 and modification of 16/06/2015 of the Sectoral Committee of Health) has been obtained from the Sectoral Committee for Social Security and Health.
At the genetic centres all data is available because it is registered in the electronic patient record. The data is then sent to Sciensano. Sciensano is responsible for processing the data. This organisation is a scientific institution of the Belgian Federal State, and its main task is to perform scientific research to support policy, with the ultimate aim of improving healthcare services. Sciensano also provides expertise and public services in the field of public health.
The Central Registry of Rare Diseases has a Supervisory Committee. This is a multi-stakeholder committee that sets out the priorities and the steps to be taken by consensus. It is made up of representatives of the Insurance Committee of the NIHDI, the eHealth Platform, the Healthcare Department of the NIHDI, the College of Human Genetics, the Belgian Health Care Knowledge Centre (KCE), the Public Health and Social Affairs Policy Unit, the Federal Public Service for Health, Food Chain Safety and Environment, the Federal Agency for Medicines and Health Products, the Rare Diseases and Orphan Drugs Fund, the Committee for advice on healthcare provision in relation to chronic diseases and specific conditions, and Sciensano.
The Central Registry of Rare Diseases is part of the National Plan for Rare Diseases proposed by the Minister of Public Health at the start of 2014. 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.
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