Research & Innovation - Participant Portal


TOPIC : Rare Disease Registries

Topic identifier: PJ-06-2016
Publication date: 21 December 2016

Types of action: HP-PJ Project
Opening date:
21 December 2016
Deadline: 21 March 2017 17:00:00

Time Zone : (Brussels time)
  3rd Health Programme
Topic Description

Priorities of the year, objectives poursued and expected results

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.

Description of the activities to be funded under a call for proposals

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).

Topic conditions and documents

Please read carefully all provisions below before the preparation of your application. 

  1. List of countries and applicable rules for funding: Described in section 6 of the Call for proposals
  1. Eligibility and admissibility conditions: Described in sections 5 and 6 of the Call for proposals
  1. Evaluation

            3.1.  Evaluation criteria and procedure, scoring and threshold: Described in sections 8 and 9 of the Call for proposals
           3.2 For submission and evaluation process, see the Guide for Applicants

  1. Proposal page limits and layout: Please refer to Part B of the standard proposal template.
  2.  Indicative timetable for evaluation and grant agreement: Described in section 3 of the Call for proposals
  1. Provisions, proposal templates and evaluation forms:

Project (HP-PJ)

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  1. Additional provisions:
    Please perform a financial viability self-check, using the PP tool of the financial viability self-check.
  1. Additional documents:

Health Programme Decision

Annual workplan Financial regulation


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