The European Commission (DG Health) has launched a new call for proposals for a pilot project in the area of Rare Diseases. This will be founded by the European 3rd Health Programme.
PP-2-1-2016 – Pilot project — Establishing a Registry of Rare Congenital Malformations (as part of the Rare Diseases Registry), drawing on the structure, organization and experience of the Registry of Congenital Malformations
- The key objective of this pilot project is to set up a registry of rare congenital malformations as a part of rare diseases national registers. The project should be implemented at a national level.
- The secondary aim of the project is to provide an example of how to extend an existing birth defects registration and surveillance system to a rare diseases registration system.
- The birth defects registration system has already been set up in several MSs as part of the EUROCAT surveillance network. The pilot project provides a model for exploring whether a birth defects registry can be extended to form a rare diseases registry.
- The pilot project should contribute to the development of an EU Platform on Rare Diseases Registration to provide a common access point to data collections on rare diseases across Europe and to be compatible with platform tools.