“Rare Disease Registries in Europe”, an updated list of the current situation in the European Union

Orphanet publishes an updated report on Rare Diseases Registries in European Union

June 12, 2015

Registries and databases are essential key tools for the improvement in patient care and health planning, constituting the only way to reach a reasonable sample size for epidemiological and/or clinical research. The importance of registries is even greater when it comes to rare diseases, where the small number of patients and their geographical dispersion results in a general unawareness of the exact number of existing patients and a decentralized care for the diagnosed ones.

After the inclusion of the support for specific diseases networks and registries as a Recommendation dictated by the European Commission, (Council Recommendation on an action in the field of rare diseases (2009/C 151/02 )) it is undeniable that the significance and weight of these tools has increased rapidly, leading to an urgent need of creating accessible technological platforms to register every patient diagnosed.

With the aim of compiling the existing rare disease registries in European Union, Orphanet has recently published “Rare disease Registries in Europe”, an updated document that collects all the information regarding specific rare disease or group of diseases in the European Union or other participants in the consortium Orphanet countries.

ENERCA is highly aware of the decisive step forward that the creation of a registry in rare anaemias will support, also the creation of a European Reference Network of Centres of Expertise. For this aim, a pan-European interoperable electronic Registry for major Rare Anaemias and other epidemiological health records is currently being developed by ENERCA through its partner Thalassaemia International Federation (TIF) in collaboration with Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS). The e-Registry is considered to be one of our major goals in this stage of the project and will be available in the upcoming months.

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