Call for proposals

3rd Health Programme - Rare Disease Registries - PJ-06-2016

Objectives and description

Patient registries and databases constitute key instruments to develop clinical research in the field of rare diseases, to improve patient care and healthcare planning. They are the best way of pooling data to achieve a sufficient sample size for epidemiological and/or clinical research. Indeed, registries serve as a recruitment tool for the launch of studies focusing on disease etiology, pathogenesis, diagnosis or therapy.

In the Council Recommendation of 8 June 2009 on an action in the field of rare diseases Member States committed themselves to consider supporting at all appropriate levels, including the EU level, for epidemiological purposes, registries and databases, whilst being aware of independent governance.

In order to support this process and in particular the interoperability of data in rare diseases registries the Commission decided to set up a European Platform on rare diseases registration.

As laid down in Article 12 of the Directive on the application of patients’ rights in cross-border healthcare registries will be a one of the objectives of the European Reference Networks to be set up. Therefore, only approved ERNs are eligible to be co-funded. Please check whether your organisation forms part of an officially approved ERN.

ERN is a network connecting health care providers and centres of expertise of highly specialised healthcare, for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise no matter where they are in Europe. http://ec.europa.eu/health/ern/implementation/faq_en

Eligible activities

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).

Eligible participants - Minimum conditions

As laid down in Article 12 of the Directive on the application of patients’ rights in cross-border healthcare registries will be one of the objectives of the European Reference Networks to be set up. The present call and the proposed EU co-funding is therefore limited to proposals coming from such approved ERNs.

More specifically, are eligible under this call, whether as coordinators or associated partners, applicant organisations which are members of official European Reference Networks and which fall under the scope of Directive 2011/24/EU57, i.e. which have been positively assessed and approved by the Board of the Member States. Grant applications are eligible if submitted by legal persons. More specifically, the applicants must be legally established organisations, public authorities, public sector bodies, in particular research and health institutions, universities and higher education establishments.

Applicants participating in a project proposal have to be different legal entities (i.e. independent from each other) from at least 3 countries participating in the Health Programme.

Funding conditions and duration

The total indicative amount of the present call is EUR 1.200.000. In line with the text of the funding decision (Annual Work Programme 2016) which foresees the creation of 3-4 new registries, the indicative budgetary ceiling per grant to be awarded in 2017 is EUR 400.000.

The EU grant is limited to a maximum co-funding rate of 60% of eligible costs.

The maximum duration of a project is 36 months.

Deadline of proposals' submission

The deadline for the submission of proposals is on 21 March 2017, 17:00:00 Brussels time.

Applications must be submitted online via the Participant Portal.

Further information

Please find attached the call documentation.

List of approved ERNs: http://ec.europa.eu/health/ern/implementation/call_en

More information: https://ec.europa.eu/research/participants/portal/desktop/en/opportunities/3hp/topics/pj-06-2016.html

Kind regards,