Hospital Sant Joan de Déu
Sharing to move ahead

Orphanet has published a new report: "Rare Disease Registries in Europe".

Thursday, April 9, 2015

Orphanet has published a report 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. The "Rare Disease Registries in Europe" report, updated with information from January 2015, is available in English.

Records and databases of patients are key to the development of clinical research in the field of rare diseases tool to improve patient care and health planning. In addition, records of patients treated with orphan drugs are particularly relevant as they allow gathering data on treatment efficacy and possible side effects after marketing authorization.

Source of news: Ciberer.

For further information please visit the following link.

Last modified: 
04/12/2015