EURORDIS Partners in New European Registries Project

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-founded by the European Commission’s DG Health and Consumers within the EU Program of Community Action in the field of Public Health. EPIRARE started officially on April 15, 2011 and is coordinated by the Istituto Superiore di Sanità at the Italian Ministry of Health.
The main aim of the EPIRARE project is to prepare the ground for the possible future creation of an EU platform for the collection of data on rare disease patients. In order to achieve this ultimate goal, the project will seek to address the regulatory, ethical, technical and financial issues related to the development of rare disease patient registries. Given the proven usefulness of registries to advance rare disease knowledge and treatments, there is urgent need for a common reference framework before spontaneous initiatives find independent solutions and heterogeneous legal bases, resulting in a duplication of time and resources.
EURORDIS is one of 11 partners of the project and is specifically responsible for defining possible policy scenarios on the scope, common data set, governance and sustainability of rare disease patient registration; this being an essential prerequisite to define a future EU common policy on patient registries. EURORDIS will also contribute to the identification of patient registry initiatives and will survey the needs and expectations of patients in this area. So far, a major achievement of the project has been the completion of the “EPIRARE survey” intended to explore the functioning, resources, problems, needs and expectations of existing rare disease registries in European Member States and in other Countries.

Acknowledge contributions to EURORDIS for the project by Novartis, Genzyme, Millennium.


Page created: 20/05/2011
Page last updated: 25/07/2012
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