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European Joint Programme on Rare Diseases (EJP RD), first call
Deutsche Forschungsgemeinschaft (DFG)
The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear benefit for patients.
Topic: Research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases.
Joint research proposals may be submitted by applicants belonging to one of the following categories (according to country/regional regulations):
o academia (research teams working in universities, other higher education institutions or research institutes)
o clinical/public health sector (research teams working in hospitals/public health and/or other health care settings and health organisations)
o enterprise (all sizes of private companies). Participation of small and medium-size enterprises (SMEs) is encouraged when allowed by national/regional regulations
o patient advocacy organisations (PAOs - see more information below and refer to the INSERM contact point)
Only transnational projects will be funded. Each consortium submitting a proposal must involve a minimum of four eligible and a maximum of six eligible research partners from at least four different countries participating to the call (see list above). No more than two eligible research partners from the same country participating in the call will be accepted in one consortium.
Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:
a. Research to accelerate diagnosis, e.g:
o New schemes for finding diagnosis for undiagnosed patients;
o Improved annotation and interpretation of variants and development of diagnostic tests for the more prevalent variants;
o Novel modalities of functional analysis of candidate variants through in vitro, cell, tissue or animal studies.
o -omic or multi-omic integrated approaches for discovery of disease causes and mechanisms including development of relevant bioinformatic tools;
b. Research to explore disease progression and mechanisms, e.g:
o Natural history studies and patient registries (also for clinical trial readiness). Whenever possible these should include development and use of patient reported outcome measures. In addition, the exploration of the use of standardized M-Health-based surveillance instruments and of patient entered data to gather information for natural history studies is welcome;
o Identification of clinical biomarkers, clinical outcome measures and surrogate endpoints;
o Identification of novel pathophysiological pathways in appropriate disease models that effectively mimic the human condition.
Furthermore, additional elements need to be considered in the application:
The design of the study (sample collection, statistical power, interpretation, relevant models for hypothesis validation) must be well justified and has to be part of the proposal;
For natural history studies and patient registries: strategies and timelines for patient recruitment, retention, assessment, and analysis must be included. Data supporting the proposed recruitment numbers is mandatory. The study design and objectives should take into consideration what information regarding the rare disease population would be needed in order to pursue clinical trials or other health care related studies in that rare disease. There always need to be clear research questions that are addressed in the study/registry. Clear plans for sustainability of the resources must be described. Consideration of common data elements as outlined in the recent publication "Set of Common Data Elements for RD Registration" (http://www.erare.eu/sites/default/files/SetCommonData-EU%20RD%20Platform_CDS%20_final.pdf) is highly recommended;
Appropriate bioinformatics and statistical skills should constitute, whenever justified, an integral part of the proposal, and the relevant personnel should be clearly specified;
The new research data resulting from the project should be treated permissible according to the FAIR principles (for more information: see "The FAIR Guiding Principles for scientific data management and stewardship" (https://www.nature.com/articles/sdata201618), and deposited and shared, according to the national/regional rules of the countries involved. It is strongly advised to make data accessible through RD-Connect (http://rd-connect.eu/ - connecting databases, patient registries, biobanks and clinical bioinformatics data into a central resource for researchers worldwide) and through Elixir (https://www.elixir-europe.org/platforms/data/elixir-deposition-databases - compiling a list of resources for the deposition of experimental, biomolecular data). To make research data findable, accessible, interoperable and re-usable (FAIR), a data management strategy for the proposed full project is mandatory in the full proposal stage. Some countries involved in EJP RD JTC 2019 will also ask for a data management plan (DMP) at national level at the stage of full proposal or after granting of the project.
To ensure that the needs and priorities of rare disease patients are adequately addressed, they or their representatives should be appropriately involved in all projects wherever relevant. For examples, inclusion and involvement of patient representatives includes but is not restricted to natural history studies / registries where patients should be involved in the governance of the registry. Please consult the INVOLVE website for information on various ways to involve patients: http://www.invo.org.uk/resource-centre/resource-for-researchers/. For additional guidance and practical advice on patient involvement in research studies, please consult also the JPND guidelines: http://www.neurodegenerationresearch.eu/wp-content/uploads/2013/11/JPND-guide-for-Patient-and-Public-Involvement.pdf.
Organization: BMBF/PT-DLR
Website: www.gesundheitsforschung-bmbf.de
Contact Person: Katarzyna Saedler
Phone: +49 (0)228 3821 1947
Email: Katarzyna.Saedler@dlr.de or

Contact Person: Michaela Fersch, Phone: +49 (228) 3821 1268, Email: michaela.fersch@dlr.de or
Contact Person: Ralph Schuster, Phone: +49 (228) 3821 1233, Email: ralph.schuster@dlr.de
Organization: DFG
Contact Person: Katja Großmann, Email: katja.grossmann@dfg.de, Phone: +49 (0) 228 885 2565
Further information: