The workshop held on 13 November 2012 in Luxembourg was organised through the EUCERD Joint Action (N° 2011 22 01).
The workshop heard from experts in rare diseases (RD) registration, who shared the latest developments and discussed how to achieve optimum harmonization and cooperation in this varied field. Topics under consideration included how to support the European Commission in transforming the outputs of key actions and initiatives into robust policies (to then be integrated with other RD initiatives), as well as how to assist the EU Member States in implementing such policies and recommendations as may emerge from the various projects. Important issues for discussion were the Commission’s vision for the future of RD registries, along with the feasibility of creating an overarching European platform for RD registration. The transatlantic dimension introduced by the IRDiRC was emphasised and the value of global registration models and experiences was acknowledged. The overall aim of the workshop was to establish an expert working group which is well-placed to advise and shape policies pertaining to RD registration at the EU level and beyond.
- Overview of Current Registry Initiatives
- Registry Types and Data Access Models – T. Wagner
- Case Study – Anil Mehta
- EURORDIS/NORD/CORD Joint Declaration on the 10 Key Principles for Rare Disease Patient Registries
- Joint EBE-EuropaBio Task Force on Rare Diseases and Orphan Medicines: Position Paper for Rare Diseases and Orphan Drugs Registries and Databases