European Joint Programme on Rare Diseases (EJP RD) Call for Proposals 2021
Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease
The European Joint Programme on Rare Diseases (EJP RD) has successfully implemented two Joint Transnational Calls since 2019 to further help in coordinating the research efforts of European, Associated and non-European countries in the field of rare diseases and implement the objectives of the International Rare Disease Research Consortium (IRDiRC). These actions are following the ten Joint Transnational Calls for rare diseases research projects launched previously by the ERA-Net E-Rare since 2006.
A number of national and regional funding organisations will participate in the EJP RD Joint Transnational Call (JTC) 2021 and will fund multilateral research projects on rare diseases under the EJP-COFUND action. The following funding organisations in their respective countries/regions have expressed their interest in joining the JTC2021:
- Austrian Science Fund (FWF), Austria
- Research Foundation Flanders (FWO), Belgium, Flanders
- Fund for Scientific Research – FNRS (F.R.S.-FNRS), Belgium, French-speaking community
- Canadian Institutes of Health Research – Institute of Genetics (CIHR-IG), Canada
-
Ministry of Social Affairs of Estonia (MoSAE), Estonia
- French National Research Agency (ANR), France
- Federal Ministry of Education and Research (BMBF), Germany
- National Research, Development and Innovation Office (NKFIH), Hungary
- Chief Scientist Office of the Ministry of Health (CSO-MOH), Israel
- Italian Ministry of Health (MoH-IT), Italy
- Institut national de la santé et de la recherche médicale (INSERM), France
- Tuscany Region (RT/TuscReg), Tuscany (Italy)
- Research Council of Lithuania (LMT), Lithuania
- National Research Fund (FNR), Luxembourg
- National Centre for Research and Development (NCBR), Poland
- Slovak Academy of Sciences (SAS), Slovakia
- National Institute of Health Carlos III (ISCIII), Spain
- Swiss National Science Foundation (SNSF), Switzerland
- Scientific and Technological Research Council (TUBITAK), Turkey
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 future benefit for patients.
Topic: Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease
Research proposals should cover at least one of the following areas
- Health & social care services research to improve patient and familial/household health outcomes
- Economic Impact of Rare diseases
- Psychological and Social Impact of Rare diseases
- Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
- e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
- Development and enhancement of health outcomes research methods in rare diseases
- Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.
Other research topics are possible as long as they focus on SSH research and are not in the excluded topics list.
The following approaches and topics are excluded from the scope of the call:
- Interventional clinical trials to prove efficacy of drugs, treatments, surgical procedures, medical technology procedures. This also includes studies comparing efficacy, e.g. B. two surgical techniques or therapies. Clinical phase IV pharmacovigilance studies cannot be funded either.
- Studies on the exclusive testing of the safety of medical devices.
- Health technology assessment reports (HTA) for a specific product.
- Projects focusing on meta-analyses and systematic reviews.
- Creation of new registers or establishment of new long-term cohorts and / or promotion of existing registers or long-term cohorts beyond the specific research question of the submitted project.
- Development of new digital or technological tools.
- Projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases as covered in EJP RD JTC 2019.
- Development of new therapies as covered in EJP RD JTC 2020.
- Projects focusing only on rare neurodegenerative diseases which are within the main focus of the Joint Programming Initiative on Neurodegenerative Disease Research (JPND). These are: Alzheimer’s disease and other dementias; Parkinson’s disease (PD) and PD-related disorders; Prion diseases; Motor Neuron Diseases; Huntington’s disease; Spinal Muscular Atrophy and dominant forms of Spinocerebellar Ataxia. Interested researchers should refer to the relevant JPND calls. Childhood dementias/neurodegenerative diseases are not excluded.
- Rare infectious diseases, rare cancers and rare adverse drug events in treatments of common diseases.
Type of studies
- Qualitative Analysis
Description and analysis of patient’s lifepath, as well as healthcare and social care processes and structures, using qualitative methods, form an important part of SSH research. Qualitative studies are often the starting point for identifying relevant questions for further quantitative studies. The projects can also include further development of scientific instruments and methods and their validation in practice. The sole translation, evaluation and/or testing of individual questionnaires is not funded.
- Non-interventional quantitative studies
In order to be able to name the strengths and weaknesses of a system, in a scientifically sound manner, the collection and evaluation of relevant and valid data using recognized methods and procedures are necessary, as well as the further development and validation of scientific instruments and methods. Adequate comparison groups are essential. In this type of studies, the system is preferably analyzed prospectively. This includes observational studies like anthropological studies, case control studies, cross-sectional and longitudinal studies as well as cost-effectiveness studies.
- Interventional studies on care implementation
These are comparative interventional studies to evaluate the effectiveness of practices under everyday conditions. The study design must be multi-armed. Structural equality of the groups can be achieved through suitable measures, e.g. by randomization. In contrast to clinical studies that show the efficacy of a therapeutic measure, e.g. test a drug, the interventional studies funded within the scope of this Call require proof of effectiveness and the effect of measures in everyday care e.g. in heterogeneous patient groups examined. This requires the use of patient-relevant endpoints, e.g. health-related quality of life, as the primary targets of the studies. Other methodological prerequisites for an interventional study on care implementation include broad inclusion and exclusion criteria, if possible, no requirements for the patients going beyond everyday care and the conduct of the study in the facilities in which the examined intervention is used as part of regular practices. Project proposals must clearly demonstrate the potential health impact as well as the added value of transnational collaboration. This includes participatory action research. For interventional studies on care implementation, feasibility must be clearly demonstrated regarding the 3 years duration of the project, including realistic timelines for regulatory aspects like ethical approval etc. in different countries.
CONSORTIUM MAKEUP
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, EC associated states and Canada. Applicants are encouraged to assemble groups of rare diseases based on solid criteria and commonalities if these leverages added value in sharing resources or expertise and has the capacity to elucidate common disease mechanisms and therapeutic targets.
Partners belonging to one of the following categories may request funding under a joint research proposal (according to country/regional regulations):
- Academia (research teams working in universities, other higher education institutions or research institutes),
- Clinical/public health sector (research teams working in hospitals/public health and/or other health care settings and health organizations),
- Enterprises (all sizes of private companies) when allowed by national/regional regulations,
- Patient advocacy organizations.
The maximum duration of the project is three years.
Only transnational projects will be funded. Each consortium submitting a proposal must involve three to six eligible principal investigator partners from at least three different participating countries. No more than two eligible partners from the same country can be present in each consortium (further national limits may apply). This limit applies to Early Career Researchers and partners from underrepresented countries (see below). PAOs requesting funding do not count toward this total.
The number of partners can be increased to 8 in two cases:
- The inclusion of partners from participating countries usually underrepresented in projects (Czech Republic, Slovakia, Hungary, Lithuania, Poland, and Turkey).
- The inclusion of Early Career Researchers as full partners.
The aim of this call is to support multinational, innovative, and multidisciplinary humanities and social sciences research projects to improve healthcare implementation and everyday life of people living with a rare disease.
Consortia have to include both SSH and clinical expertise in their consortium. Moreover, to ensure that the needs and priorities of rare disease patients are adequately addressed, they or their representatives must be appropriately involved in all projects.
Our matchmaking tool will help you find your ideal project partner.
PRELIMINARY TIMETABLE
There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals.
An independent international Scientific Evaluation Committee will carry out a scientific evaluation according to specific evaluation criteria.
|
16th February 2021 |
Pre-proposal submission deadline |
|
End of April 2021 |
Invitation to full proposal |
|
15th June 2021 |
Full proposal submission deadline |
|
30th July 2021 |
Deadline for rebuttals |
|
November 2021 |
Notification of funding decision |
CONTACT
For general questions regarding the joint call please contact the Joint Call Secretariat at the FFRD, France: JTC2021@ejprarediseases.org
Diana Désir-Parseille
diana.desir-parseille@fondation-maladiesrares.com
+33 (0) 1 58 14 22 81
Laura Benkemoun
laura.benkemoun@fondation-maladiesrares.com
For questions regarding national eligibility criteria and requirements please contact the national contact person listed below
ADDITIONAL INFORMATION
NATIONAL CONTACT POINTS
| Country/Region | Funding Organisation | Contact Details |
|---|---|---|
| Austria | Austrian Science Fund (FWF) www.fwf.ac.at | Stephanie Resch +43 (1) 505 67 40-8201 stephanie.resch@fwf.ac.at |
| Belgium | The Research Foundation – Flanders (FWO) | Toon Monbaliu eranet@fwo.be +32 (0)2 550 15 70 |
| Belgium | The Fund for Scientific Research – FNRS (F.R.S.-FNRS) | Dr. Florence Quist Florence.quist@frs-fnrs.be +32 (0)2 504 9351 |
| Canada | Canadian Institutes of Health Research Institute of Genetics (CIHR-IG) www.cihr-irsc.gc.ca | Jennifer Vineham jennifer.vineham@cihr-irsc.gc.ca +1 343-552-2760 |
| Czech Republic | Ministry of Education, Youth and Sports (MEYS) www.msmt.cz | Judita Klosaková (MSMT) +420 234 811 504 Judita.Klosakova@msmt.cz |
| France | The French National Agency for Research – ANR | Dr. Florence Guillot florence.guillot@anr.fr EJPRDcall@anr.fr |
| Germany | Federal Ministry of Education and Research (BMBF) / Project Management Agency of the German Aerospace Centre (BMBF/ PT-DLR) www.gesundheitsforschung-bmbf.de/ | Dr. Katarzyna Saedler Dr. Michaela Fersch Dr. Ralph Schuster +49228-38212453 SelteneErkrankungen@dlr.de |
| Hungary | National Research, Development and Innovation Office (NKFIH) www.nkfih.gov.hu | Előd Nemerkényi +36 1 8963987 elod.nemerkenyi@nkfih.gov.hu |
| Israel | Chief Scientist Office – Israeli Ministry of Health (CSO-MOH) | Dr. Irit Allon +972-2-5082167 IRIT.ALLON@moh.gov.il |
| Italy | Italian Ministry of Health (MoH-IT) www.salute.gov.it | Maria Grazia Mancini mg.mancini-esterno@sanita.it Dr. Monica Paganelli +39 06 5994 2408 m.paganelli@sanita.it |
| Italy | Ministry of Education, Universities and Research (MIUR) www.ricercainter nazionale.miur.it/ | Aldo Covello +39 06.5849.6465 aldo.covello@miur.it Maria Bianco +39 06.5849.7146 maria.bianco@miur.it |
| Italy (Tuscany) | Tuscany Region (RT/TuscReg) www.regione.toscana.it | Donatella Tanini +39 055 4383256 Teresa Vieri +39 055 4383289 ejprare@regione.toscana.it |
| Lithuania | Research Council of Lithuania | Dr. Živilė Ruželė +370 676 14383 zivile.ruzele@lmt.lt |
| Luxembourg | Luxembourg National Research Fund | Dr. Sean Sapcariu +352 691 362 831 sean.sapcariu@fnr.lu |
| Poland | National Centre for Research and Development (NCBR) www.ncbr.gov.pl/en/ | Marcin Chmielewski +48 22 39 07 109 marcin.chmielewski@ncbr.gov.pl |
| Slovakia | Slovak Academy of Sciences | Dr. Zuzana Cernakova +421 (0) 2 5751 0 118 Cernakova@up.upsav.sk |
| Spain | National Institute of Health Carlos III | Clara Martín +34 91822 2567 c.martin@isciii.es |
| Switzerland | Swiss National Science Foundation | Dr. Florence Ettlin +41 31 308 21 87 florence.ettlin@snf.ch |
| Turkey | The Scientific and Technological Research Council of Turkey (TUBITAK) | Dr. Jale Sahin +90(312)298 1796 EJPRD@tubitak.gov.tr |