EPIRARE, the European Platform for Rare Disease Registries, is a new project to ’build consensus and synergies for the EU registration of rare disease patients’. The 3-year project (2011-2013) is funded by the European Commission’s DG Health & Consumers within the framework of the EU programme of Community Action in the field of Public Health. It 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.
EURORDIS, cooperating organisation within Rare Cancers Europe, is one of 11 partners 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.
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.
A dedicated EPIRARE project Website has been set up.