Please note that the call is now CLOSED. To see the list of projects recommended for funding please see the section "Funded projects" on this page.
We would like to apologise for the error concerning the number of projects recommended for funding that occured in the E-Rare Newsletter - 12 (and not 13) projects were selected for funding in JTC 2013.
AIM AND TOPICS
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 translational research approach.
Subject: a group of rare diseases or a single rare disease following the European definition i.e. a disease affecting not more than five in 10.000 persons in the EU
Participating countries: Austria, Belgium (Flanders and French speaking community), Canada (including Québec), France, Germany, Hungary, Israel, Italy, Poland, Portugal, Romania, Spain, Switzerland and Turkey.
- Definition of new nosological entities, epidemiological studies, genotype/phenotype correlations, natural history of diseases
- Characterisation of the genetic/molecular basis of specific diseases
2. Research on rare diseases including genetic, epigenetic, and pathophysiological studies, using innovative and shared resources, technologies (OMICS, new generation sequencing, etc.) and expertises. The clinical relevance of this research must be clearly demonstrated.
3. Research on development of applications for diagnosis and therapies for rare diseases. This may include identification and characterisation of (bio)-markers for diagnosis and prognosis, development of innovative screening systems and diagnostic tools, the generation of relevant cellular and/or animal models, and preclinical studies using pharmacological, gene or cell therapies.
Please note that the information concerning JTC 2013 provided on this PAGE is NOT exhaustive. For all details please download ALL call documents available in "Download documents" section.
MOTIVATION
There are at least 6000 to 7000 distinct rare diseases, the great majority being of genetic origin. Although individually rare, taken together rare diseases affect at least 26-30 million people in Europe. Moreover, they represent a major issue in health care: a large number of these diseases lead to a significant decrease of life expectancy and most of them cause chronic illnesses with a large impact on quality of life and the health care system.
Therefore, research on rare diseases is needed to provide knowledge for prevention, diagnosis and better care of patients. Yet, research is hampered by lack of resources at several levels: (1) Few scientists work on one specific disease, (2) There are few patients per disease and they are scattered over a large geographic area, causing difficulties to gather the necessary cohorts, (3) Existing databases and material collections are usually local, small, and not accessible or standardised, (4) Diseases often have complex clinical phenotypes and require interdisciplinary cooperation for research, hence, interdisciplinary approaches to treatment.
The specificities of rare diseases - limited number of patients, scarcity of relevant knowledge and expertise, and fragmentation of research - single them out as a distinctive domain of very high European added-value. Rare diseases are therefore a prime example of a research area that can strongly benefit from collaboration/coordination on a transnational scale.
In this context, the ERA-Net “E-Rare” for research programmes on rare diseases has been extended to a second phase “E-Rare-2” (2010-2014) to further help in coordinating the research efforts of European countries in the field of rare diseases.
The following parties:
have decided to open the fifth E-Rare joint transnational call (JTC 2013) for funding multilateral research projects on rare diseases. The call is being opened simultaneously by the partners in their respective countries.
AIM OF THE CALL
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 translational research approach. Projects shall involve a group of rare diseases or a single rare disease following the European definition i.e. a disease affecting not more than five in 10.000 persons in the European Community. Rare infectious diseases, rare cancers and rare adverse drug events in treatments of common diseases are excluded from the scope of this call.
MANAGEMENT BOARDS
Two boards, the Call Steering Committee (CSC) and the Scientific Evaluation Committee (SEC), will manage the evaluation process of the call with support of the Joint Call Secretariat (JCS) (set up at PT-DLR, Germany). The process includes the evaluation procedure of pre- and full-proposals and the final selection and award of research projects.
APPLICATION
Funding recipients/Eligibility
Joint research proposals may be submitted by applicants belonging to one of the following categories (according to country/regional regulations):
Please note that the inclusion of a non-eligible partner in a proposal leads to the rejection of the entire proposal without further review. Whilst applications will be submitted jointly by research groups from several countries, individual groups will be funded by the individual funding organisation of their country/region that is participating in the E-Rare-2 JTC 2013. The applications are therefore subjected to eligibility criteria of individual funding organisations. Applicants are strongly advised to contact their corresponding national/regional representative and confirm eligibility with their respective funding organisations in advance of submitting an application (see national/regional contact details and Call text document id Download documents section on this website).
Only transnational projects will be funded. Each consortium submitting a proposal must involve a minimum of three and a maximum of six research groups from at least three different countries participating to the call (see list above).
Research groups from countries whose funding organisations are not partner in this E-Rare-2 call may participate in projects if they are able to secure their own funding. Nevertheless the overall maximum number of research groups in a given consortium should be maintained at six. They must state clearly in the proposal if these funds are already secured or if not, how they plan to obtain funding in advance of the project start. It will be required to document the availability of their funds before October 1, 2013.
Consortia of projects funded in previous E-Rare joint transnational calls (2007 and 2009) can apply for funding for a second phase/extension of their cooperation. These consortia must clearly demonstrate the success of the current project and innovative scientific aims for their future collaboration. Their applications will compete with applications for new research projects.
The number of participants and their research contribution should be appropriate for the aims of the transnational research project and reasonably balanced in terms of national participation. The latter means that there must not be more than two research groups from one country in one project proposal. Each transnational collaborative project should represent the critical mass to achieve ambitious scientific goals and should clearly demonstrate an added value from working together.
Each transnational proposal must nominate a project consortium coordinator among the project partner principal investigators. The coordinator must be a project partner from an E-Rare-2 JTC 2013 funding country/region. The project coordinator will represent the consortium externally and towards the JCS and CSC, and will be responsible for its internal scientific management (such as controlling, reporting, intellectual property rights issues and contact with the JCS). Each project partner will be represented by one (and only one) principal investigator. Within a joint proposal, each project partner principal investigator will be the contact person for the relevant country/regional funding organisation.
The duration of the projects can be up to 3 years. Nevertheless, a partner can receive funding for less than 3 years according to E-Rare-2 JTC 2013 funding organisations eligibility criteria and regulations.
Submission of joint proposals
There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals. In both cases, one joint proposal document (in English) shall be prepared by the partners of a joint transnational proposal, and must be submitted to the JCS by uploading it on the electronic submission system by one spokesperson, the coordinator.
Joint pre-proposals (in English) must be received by the JCS in an electronic version no later than 31st January 2013 at 08 p.m. GMT. The pre-proposals should strictly follow the “Guidelines for applicants”.
The decision on selection of applications for invitation to full proposal will be communicated by mid of April 2013.
Please note that joint full proposals will be accepted only from those applicants explicitly invited by the JCS to submit them. Full proposals (in English) must be received by the JCS in an electronic version no later than 29th May 2013 at 08 p.m. GMT.
The information given in the pre-proposal is binding. Thus, any fundamental changes between the pre- and full proposals, e.g. composition of the consortia, objectives of the project, must be communicated to the JCS with detailed justification and will only be allowed by the CSC under exceptional circumstances.
The selection on full proposals will be communicated to applicants as soon as possible and before the end of October 2013.
Further information on how to submit pre-proposals and full proposals electronically will be made available through the E-Rare website (www.e-rare.eu) and in the "Guidelines for applicants". The forms that have to be used for submission of pre-proposals and full proposals are available on the E-Rare website in the "Download documents" section. Applicants should take note of individual national/regional rules, and should contact their national/regional contact person for any questions (see “National contact points” section).
For applicants from some countries/regions it might be necessary to submit the proposals and/or other information directly to the country/regional funding organisations. Therefore, applicants are strongly advised to check their national/regional funding organisations for more details (see country/regional contact details and "Guidelines for applicants").
Further information
If you need additional information, please contact the JCS or your national/regional funding organisation representative (see contact information below). For further details please refer to the "Guidelines for applicants" or www.e-rare.eu
EVALUATION
Evaluation criteria
Pre-proposals and full proposals will be assessed according to specific evaluation criteria (see below), using a common evaluation form. A scoring system from 0 to 5 will be used to evaluate the proposal’s performance with respect to the different evaluation criteria.
Scoring system:
0: fails or missing/incomplete information; 1: poor; 2: fair; 3: good; 4: very good; 5: excellent
Evaluation criteria:
Eligibility check of pre-proposals and first step peer review
Eligibility check
The JCS will check all pre-proposals to ensure that they meet the call’s formal criteria (date of submission; number and country distribution of participating research groups; inclusion of all necessary information in English, page length of each section). The JCS will forward the proposals to the CSC members who will perform a check for compliance to country/region rules.
Please note that proposals not meeting the formal criteria or the national/regional eligibility criteria and requirements will be declined without further review.
Peer review of pre-proposals
Proposals passing the eligibility check (call secretariat and country/region) will be forwarded to the SEC members for a first evaluation (see evaluation criteria above). The SEC will meet to establish a ranking of the proposals. The CSC will meet to decide which proposals will be accepted for the full proposal submission based on the SEC recommendations.
Evaluation of full proposals with right to reply (rebuttal stage)
Formal criteria check
The JCS will check the full proposals to ensure that they meet the call’s formal criteria and have not changed substantially from the respective pre-proposals before sending them to the external reviewers.
External reviewer’s evaluation
Each proposal will be allocated to at least two external reviewers who fit the profile of the application.
Rebuttal stage
Before the SEC members see the reviews from external reviewers, each project coordinator will be provided with the opportunity of studying the assessments and commenting on the arguments and evaluations of the reviewers, which remain anonymous. This stage allows applicants to comment on factual errors or misunderstandings that may have been committed by the external reviewers while assessing their proposal and to reply to reviewers’ questions. However, issues which are not related with reviewers’ comments or questions can not be addressed and the work plan cannot be modified at this stage.
The applicants will have up to one week (between first and second week of July) for this optional response to the reviewers’ comments.
SEC evaluation
The JCS will send full proposals, reviews and rebuttals to the SEC members. The SEC will meet to discuss each proposal and, after consideration of the evaluation criteria, external reviews, rebuttals and their own discussions, the SEC will make a classification of the proposals and rank proposals recommended for funding.
Funding decision
Based on the proposals’ classification established by the SEC and on available funding the CSC will suggest the projects to be funded to the national/regional funding organisations. Based on these recommendations, final decisions will be made by the national/regional funding organisations and will be subject to budgetary considerations.
The Joint Call Secretariat will communicate to all project coordinators the final decisions together with the review from the SEC.
FINANCIAL AND LEGAL ISSUES
Funding model
The E-Rare-2 JTC 2013 Funding Partners have agreed to launch a joint call using the “virtual common pot funding mode. This means that national/regional funding will be made available through national/regional funding organisations according to national/regional funding regulations. Each country/region funds only its national/regional component of the transnational research project. The funding rate within the call will be variable up to a maximum of 100% of the funds requested, according to national/regional rules. Prior to submitting a proposal, applicants should verify their eligibility and the rate of financial support with their national/regional funding organisation, and are recommended to contact their national/regional contact person (see national/regional contact details).
Funding is granted for a maximum of three years according to national regulations. Eligible costs may vary according to the corresponding national/regional funding organisation regulations. Each group is subject to the rules and regulations of their respective national/regional funding organisation.
Funding contracts
Each project includes several consortium members called research partners and one project coordinator. Each research partner (including the project coordinator) will have a separate funding contract/letter of grant according to national/regional regulations with the appropriate national/regional funding institutions.
Changes to the composition of research consortia or in budget cannot occur during the contract/letter of grant, unless there is a good justification. Any minor changes have to be well justified and the relevant funding organisations will decide upon the proper action to be taken. However, in case of major changes, an independent expert can be consulted to help with the final decision of the funding organisations. The research partners shall inform the JCS and the funding bodies of that project of any event that might affect the implementation of the project.
Research consortium agreement and ownership of intellectual property rights
The project consortium partners must sign a consortium agreement (CA) for cooperation addressing the issues given in “Guidelines for applicants” on consortium agreements (available on the E-Rare-2 website). The research consortium is strongly encouraged to sign this CA before the official project start date, and in any case the CA has to be signed no later than six months after the official project start date. Upon request, this consortium agreement must be made available to the concerned E-Rare-2 JTC 2013 funding organisations.
Results and new Intellectual Property Rights (IPR) resulting from projects funded through the
E-Rare-2 Joint Transnational Call will be owned by the researchers’ organisations according to national rules on IPR. If several participants have jointly carried out work generating new IPR, they shall agree amongst themselves (consortium agreement) as to the allocation of ownership of IPR, taking into account their contributions to the creation of those IPR as well as the European guidelines on IPR issues.
The results of the research project and IPR created should be actively exploited and made available for use, whether for commercial gain or not, in order for public benefit to be obtained from the knowledge created.
The funding partners shall have the right to use documents, information and results submitted by the research partners and/or to use the information and results for their own purposes, provided that the owner’s rights are kept and taking care to specify their origin.
IRDiRC policies and guidelines
The project partners are expected to follow IRDiRC policies and guidelines once they have been officially adopted and to participate in IRDiRC working groups once they have been established. More information will be made available at the full proposal stage.
RESPONSIBILITIES, REPORTING REQUIREMENTS AND DISSEMINATION
The coordinators of all the funded projects must submit brief annual scientific project reports and a final scientific project report (within six months of the end of the project) to the JCS. All reports must be in English and use a common report form that will be provided. The research partners are jointly responsible for delivery of the reports, and the JCS will only accept reports delivered on behalf of the consortium, via the project coordinator.
If required, each participant should submit financial and scientific reports to their national/regional funding organisations, according to national/regional regulations. The progress and final results of each individual contract/letter of grant will be monitored by the respective national/regional funding organisations.
Funding recipients must ensure that all outcomes (publications, etc.) of transnational E-Rare-2 projects include a proper acknowledgement of ERA-Net E-Rare-2 and the respective national/regional funding partner organisations.
The coordinators and/or national group leaders might be asked to present the results of their projects at an intermediate and/or a final status symposium organized by the JCS.
CONTACT AND FURTHER INFORMATION
The JCS is set up at PT-DLR (The German project management Agency) to assist the CSC and the national/regional funding bodies during the implementation of the call and the follow-up phase until the funded research projects have ended. The JCS will be responsible for the administrative management of the call. It will be the primary point of contact referring to the call procedures between the research consortia, the funding organisations (CSC) and the peer reviewers. The project coordinator will be the person contacted by the JCS during the application procedure, so he/she must forward this information to the other participants.
Further information on the E-Rare-2 Project, the Call and the follow-up is available at the E-Rare-2 website (www.e-rare.eu). It is advised to contact the national/regional contact person for any questions regarding the Call (please see National contact point section).
Indicative funding commitments of the participating organisations of the E-Rare-2 JTC 2013
Country/Region | Participating organisation | Envisioned amount of funding (Mio€ for 3 years) | Anticipated number of fundable research groups |
Austria | Austrian Science Fund (FWF) |
1
|
4
|
Belgium | Research Foundation Flanders (FWO) |
0.2
|
1
|
Belgium | Fund for Scientific Research (FNRS) | 0.2 | 1 |
Canada |
Canadian Institutes of Health Research Institute of Genetics(CIHR-IG) [1]
|
1.15
| 3-4 |
Canada | Fonds de recherche du Québec-Santé (FRQS) | 0.4 | 2-3 |
France | French National Research Agency (ANR) |
1
|
8-10
|
Germany | German Federal Ministry of Education and Research (BMBF) |
3
|
10-15
|
Hungary | Hungarian Scientific Research Fund(OTKA)
|
0.15
|
|
Hungary | University Pécs (UNIPECS)
|
0.1
| 1-5 |
Israel | Chief Scientist Office of the Ministry of Health (CSO/MOH)[2] |
0.24
| 4 |
Italy | Ministry of Health (MoH) | 1 | 4-6 |
Poland | National Centre for Research and Development (NCBiR), | 1 |
3-6
|
Portugal | Foundation for Science and Technology (FCT) |
0.4
|
2-3
|
Romania | Executive Agency for Higher Education, Research, Development& Innovation Funding (UEFISCDI) | 0.5 | 1-6 |
Spain | National Institute of Health Carlos III (ISCIII) |
0.5
|
2-5
|
Switzerland | Swiss National Science Foundation (SNSF)[3] | 0.82 | 5 |
Turkey | Scientific and Technological Research Council of Turkey (TÜBITAK) |
0.6
|
3-4
|
[2]The CSO/MOH will fund up to 4 projects. The funding commitment is up to 240,000 €, depending on budget availability. Maximum funding per grant is 60,000 €.
[3] SNSF has earmarked a budget of 1.0 million Swiss Francs over three years (currently equivalent to 0.82 Mio €).
Eligibility of beneficiary institutions for the participating organisations of the E- Rare-2 JTC 2013
Country/Region | Institution | Eligible benificiary Institution | ||
Academia | Clinical/public health | Company | ||
Austria | Austrian Science Fund (FWF) | Yes (3) | Yes (3) | Yes (3) |
Belgium (Flanders) | Research Foundation Flanders (FWO) | Yes | Yes (1,2) | No |
Belgium (french speaking community) | Fund for Scientific Research (FNRS) | Yes (6) | No (7,8) | No |
Canada | Canadian Institutes of Health Research Institute of Genetics (CIHR-IG) | Yes | Yes | No |
Canada (Québec) | Fonds de recherche du Québec-Santé (FRQS) | Yes | Yes | No |
France | French National Research Agency (ANR) | Yes | Yes | Yes (1) |
Germany | German Federal Ministry of Education and Research (BMBF) | Yes | Yes | Yes (1) |
Hungary | Hungarian Scientific Research Fund(OTKA) | Yes | Yes | No |
Hungary | University Pécs (UNIPECS) | Yes | Yes | No |
Israel | Chief Scientist Office of the Ministry of Health (CSO/MOH) | Yes | Yes | No |
Italy | Ministry of Health (MoH) Italy | No | Yes (4) | No |
Poland | National Centre for Research and Development (NCBiR), | Yes | Yes | Yes |
Portugal | Foundation for Science and Technology (FCT) | Yes | Yes | Yes (1) |
Romania | Executive Agency for Higher Education, Research, Development & Innovation Funding (UEFISCDI), | Yes | Yes | Yes (1) |
Spain | National Institute of Health Carlos III (ISCIII), | No | Yes (5) | No |
Switzerland
| Swiss National Science Foundation (SNSF) | Yes (9) | Yes (9) | No |
Turkey | Scientific and Technological Research Council of Turkey (TÜBITAK) | Yes | Yes | Yes (1) |
Applicants are encouraged to contact their national/regional contact points for further information
| Year | Acronym | Project Coordinator | Title |
|---|---|---|---|
2013 | An international effort to understand FSHD muscular dystrophy epigenetics | ||
2013 | Allan-Herndon-Dudley Syndrome: Mechanisms of disease and therapeutic approaches in model organism | ||
2013 | Retinitis Pigmentosa diagnosis and therapy: retinal remodeling and optogenetic reactivation of degenerated retina | ||
2013 | CLC chloride channels and Megalencephalic leukoencephalopathy: molecular mechanisms and therapeutics | ||
2013 | Primary monogenic microcephalies : from genetics to pathophysiology and the clinic | ||
2013 | Stimulating Intrinsic Repair for DMD | ||
2013 | Dysregulation of RNA in the pathogenesis of ALS | ||
2013 | Idiopathic Infantile Hypercalcemia: European-Canadian Consortium | ||
2013 | Autoantibodies to cell adhesion molecules in inflammatory neuropathies | ||
2013 | EUropean PLAtelet NEtwork for studying physiopathology of two inherited thrombocytopenias, THC2 and MYH9-RD, characterized by genetic alterations of RUNX1-target genes | ||
2013 | Genomics of cAMP signaling alterations in adrenal Cushing | ||
2013 | Lipid metabolism in the pathogenesis of hereditary spastic paraplegia: genes, biomarkers, and models for therapy |
Looking for collaborations | Contact | Interactive FAQ |
For more information ABOUT E-Rare please contact:
E-Rare Coordinator
Daria JULKOWSKA
Tel.: +33(0) 1 78 09 80 78
daria.julkowska@agencerecherche.fr
Agence Nationale de la Recherche - ANR
Health & Biology Department
50 Avenue Daumesnil
75012 Paris, France
E-Rare 2012 - Created by Toussaint Biger
