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CDE Almería – Centro de Documentación Europea – Universidad de Almería

CDE Almería - Centro de Documentación Europea - Universidad de Almería

Centro de Documentación Europea de la Universidad de Almería

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3rd Health Programme: Rare disease registries for the European Reference Networks

Inicio » EU Calls and Awards » 3rd Health Programme: Rare disease registries for the European Reference Networks

30/08/2019

This call (PJ-01-2019), which aims to support the development of rare disease (RD) registries for European Reference Networks (ERNs), belongs to the 3rd Health Programme.

Patient registers and databases are key instruments for developing clinical research in the field of rare diseases, for improving patient care and health planning. They are the best way to pool data to achieve a sufficient sample size for epidemiological and/or clinical research. The registries serve as a recruitment tool for the launch of studies focusing on disease aetiology, pathogenesis, diagnosis or therapy.

The Council of the European Union recommended that, in the field of rare diseases, Member States consider supporting, at all appropriate levels, including the EU, for epidemiological purposes, registries and databases, while being aware of the existence of independent governance. To support this process and, in particular, the interoperability of data in rare disease registries, the Commission decided to create a European Platform for Rare Disease Registries (European Platform for Rare Diseases) and to develop specific standards for the interoperability of such rare disease registries (“JRC standards” developed by the Commission’s Joint Research Centre).

Objectives

The main objectives of this call for projects for rural development registers for RNAs are:

  • To enable the creation, improvement, connection and creation of interoperable registries covering the diseases and conditions of each RNA, linking and making visible patient cohorts at European level to follow the natural course of diseases with sufficient patient data, also by registering all individual RNA registries of RNAs on the EU platform for research and development;
  • based on the previous register, develop a global approach for rare disease registries covering the respective RNAs following the standards and tools provided by the EU Rural Development Platform.

Description of the activities financed
The activities to be carried out concern the creation and development of rare disease patient registries for NRNAs and the development and quality control of existing registries.

In doing so, the following principles should be followed:

  1. Reinforce coordination and cooperation and develop synergies between the networks and their registries;
  2. Build on existing instruments and avoid duplicating similar actions or activities;
  3. Avoid the development of a variety of diverse and non-interoperable solutions.

Deadline

10th of October, 2019

More information

Funding & tenders

Publicaciones relacionadas:

European Development Clinical Trials Partnership (EDCTP): New drugs and vaccines for priority pathogens in antimicrobial resistance 2019 European Development Clinical Trials Partnership (EDCTP): Paediatric drug formulations for poverty-related diseases 2019 European Development Clinical Trials Parnership (EDCTP): Strategic actions on product-related implementation research 2019 H2020: Artificial Intelligence for Health Imaging H2020: Health, demographic change and wellbeing: Healthcare interventions for the management of the elderly multimorbid patient

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Publicaciones relacionadas

European Development Clinical Trials Partnership (EDCTP): New drugs and vaccines for priority pathogens in antimicrobial resistance 2019 European Development Clinical Trials Partnership (EDCTP): Paediatric drug formulations for poverty-related diseases 2019 European Development Clinical Trials Parnership (EDCTP): Strategic actions on product-related implementation research 2019 H2020: Artificial Intelligence for Health Imaging H2020: Health, demographic change and wellbeing: Healthcare interventions for the management of the elderly multimorbid patient

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