The workshop held on 22-23 April 2013 in Paris was organised through the EUCERD Joint Action (N° 2011 22 01) and the EPIRARE project.
Registration of patients is a key concern for all those involved in the rare disease (RD) field. Collecting a critical mass of high quality data is essential to advance RD research, to increase our understanding of rare conditions, and to support adequate healthcare planning and service provision. This is a particularly dynamic topic, and consequently this workshop was organised as a joint enterprise between EPIRARE (the European Platform for Rare Disease Registries) and the EUCERD Joint Action, to bring together the key European stakeholders in the field of RD registration and data collection. The event was held in Paris, over two days, and had two principal goals. Firstly, this was an opportunity to debate and revise the draft version of the EUCERD Recommendations on Rare Disease Patient Registration and Data Collection. A second major goal of the workshop was to discuss the current plans for developing a European platform or hub to support RD registration. This entailed an expert analysis of the current status of various relevant issues and initiatives, and many important questions were considered: the status of the revision of data protection legislation in the EU (which has the potential to impact so dramatically on rare disease research); the conclusions of the EPIRARE project and how could these feed into the wider debate; the view of various stakeholder groups concerning a EU platform/hub, and what are they willing and able to contribute; and the current plans of the EC’s Joint Research Centre (regarding the construction of a platform in Ispra, Italy. By the end of the workshop, the participants had identified four key missions for the platform, and proposed means by which impact could be ensured.