EPIRARE

The three-year EPIRARE (European Platform for Rare Disease Registries) project is co-funded by the European Commission's EU Programme of Community Action in the field of Public Health and co-funded by EURORDIS in partnership with three corporate partners

The EPIRARE project prepares the ground for creation of an EU platform for the collection of data on rare disease patients. In order to achieve this ultimate goal, the project addresses 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 in the project and specifically responsible for defining possible policy scenarios on the scope, common data set, governance and sustainability of rare disease patient registration. EURORDIS also contributes to the identification of patient registry initiatives and surveys the needs and expectations of patients in this area. One achievement of the project is the “EPIRARE survey” intended to explore the functioning, resources, problems, needs and expectations of existing rare disease registries in European Member States and other Countries. EPIRARE launched on 15 April, 2011 and is coordinated by the Istituto Superiore di Sanità at the Italian Ministry of Health.