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 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.

TopicSocial 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.

 

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 countriesNo 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.

Contact details:

International Call Secretaria:  JTC2021@ejprarediseases.org , Ms. Diana Désir-Parseille, Ms. Laura Benkemoun

National Contact Point : EJPRD@tubitak.gov.tr, Dr. Jale Şahin