EU Call for Rare Disease Registries

Aim: increase knowledge on rare diseases and develop clinical research

Eligibility: only approved ERNs are eligible to be co-funded. Are eligible applicant organisations which are members of official ERNs. The applicants (coordinator of the proposal and co-applicants) must be legally established organisations, public authorities, public sector bodies, in particular research and health institutions, universities and higher education establishments.

Scope: from at least 3 countries

Description: The activities to be carried out concern the creation of 3-4 new registries on rare diseases. These registries should constitute key instruments to increase knowledge on rare diseases and develop clinical research. Collaborative efforts to establish data collection and maintain them will be considered, provided that these resources are open and accessible. Registries should be built with the support and according to the standards set up by the European Platform on rare diseases registration and provide all necessary data to the Platform (taking the relevant data protection rules into account).

Call text: here

Operational capacity: Applicants must have the professional resources, competencies and qualifications necessary to complete the proposed action. In this respect, applicants have to submit a declaration of honour. As evidence, the general profiles (qualifications and experiences) of all relevant staff in all organisations involved in the proposed action must be provided.

Award Criteria: see call text (pp. 7-9)

Budget: EUR 1.200.000 (indicative budgetary ceiling per grant to be awarded in 2017 is EUR 400.000, for 3 to 4 registries)

Deadline to answer the call: March, 21^st

Duration: 36 months

All information: here