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Content archived on 2024-06-25

Capacity-building for patient organisations to participate in Research Activities

Objective

The project aims at addressing the needs of patient organisations (POs) in the health research sphere to foster their participation in research activities. In order to achieve this overarching goal, the project has two main objectives:

- To develop a capacity-building module, ?Understanding clinical trial protocols?, with six sessions to be implemented in 3 EU Member States, as a pilot project that could be further extended to other Member States. The sessions aim at familiarising POs with the vocabulary, concepts and key issues of clinical research. The experimental module of these sessions has been developed in cooperation between EURORDIS and INSERM and successfully implemented in France. These capacity-building sessions will empower patient representatives and boost their informed participation into clinical research (public and private), as they will be involved as true partners in clinical trials. The sessions, open to POs for rare or common diseases, will be implemented and developed in cooperation between the national rare diseases alliance in Denmark, Italy and Spain, and the relevant national research institute partner in the EU-funded ECRIN project.

- To organise a two-day European Workshop ?Gaining access to rare diseases research resources?: a pilot workshop aimed at increasing the capacities of patient representatives to understand the concepts, vocabulary, policies and instruments of health research activities at EU level, in order to be able to engage into EU funded research projects, maximise the use of existing research resources and act as catalysers for the development of research on their own disease. This will improve patient organisations participation in the rare diseases priority area of the EU 7th Framework Programme of R&D as partners, project coordinators, as well as evaluators. This will also lead to an enhanced capacity for POs to help identifying research needs and collaborate in setting research priorities.

Fields of science (EuroSciVoc)

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Keywords

Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)

Topic(s)

Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.

Call for proposal

Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.

FP6-2005-SCIENCE-AND-SOCIETY-19
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Funding Scheme

Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.

SSA - Specific Support Action

Coordinator

EUROPEAN ORGANISATION FOR RARE DISEASES
EU contribution
No data
Total cost

The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.

No data

Participants (4)

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