VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) has just published the Annual Work Programme 2019 call for grants under the Third Programme for the Union’s action in the field of health (2014-2020), which includes the call for Rare disease registries for the European Reference Networks (ERNs) (PJ-01-2019)!
Read the call document click here
Five ERNs (ERKNet, Endo-ERN, MetabERN, ERN-LUNG and ERN PaedCan) have already received financial support from the Health Programme (Annual Work Plan 2016) and are currently developing their own rare disease registries, following Joint Research Centre (JRC) standards and tools (see EU RD Platform) .
This new grant aims to financially support the remaining 19 ERNs in the preparation of their strategy in terms of research and registries, including the building and development of rare disease patient registries for ERNs and further development and quality-control of existing registries. A total of € 3.8 million is to be divided by the 19 ERNs, which corresponds to EUR 200 000 per ERN (co-funding of 60% of the total eligible costs of project), for 3 years (expected, but not mandatory, duration of the projects).
The following principles should be followed:
(i) strengthen coordination and cooperation and develop synergies among the networks and their registries;
(ii) build on existing tools and avoid doubling similar actions or activities;
(iii) avoid the development of a variety of diverse, non-interoperable solutions.
The expected outputs are:
-Setting up new or improving the existing rare disease registries;
-Better coordination and cooperation among rare disease registries;
-Increased interoperability between rare disease registries;
– Cost-effective building of registries by avoiding fragmentation and duplication of work;
-Better visibility of rare disease registries and, in particular, of those used and enhanced by ERNs.
VASCERN will apply to this call in order to further develop our registry activities.
Important dates (planned timeline):
Call publication: 14 May 2019
Opening of submission 21 May 2019
Deadline for applications: 10 October – 17:00 CET
Information on evaluation result: October to November 2019
Starting date: March 2020
For all additional information/documents on this call, click here
