THE ROMANIAN PERSPECTIVE ON RARE DISEASE REGISTRY
Abstract:
The rare disease registries were recognized by the European Commission as one of the priorities of the health system in the European Union, as they constitute the necessary foundation for the development of scientific research in this domain. The development of a rare disease registry in Romania has the purpose to carry out a systematic procedure of gathering rare disease cases in order to supervise the epidemiological indicators (incidence, prevalence, mortality, burden of diseases, costs, quality of life etc.). The Romanian rare disease registry will be able to create a connection between the patients with rare diseases, their families and the stakeholders, and to contribute to the understanding of the natural history, the evolution, the risks and the outcomes of a specific disease. A genetic, molecular, orphan drugs, and medical devices research can be developed with the help of the patients included in the registry, and the epidemiological evaluation of morbidity will contribute to health-planning and the development of various policies.
full text article in English (.EN) |