Introduction:

Health is more than bioscience and medicine. Health also strongly relies on adequate social, psychological, cultural and historical resources. Care is more than healthcare: it is "the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something". Social sciences and Humanities (SSH) help understanding all dimensions of health and care: human condition, suffering, personhood, our responsibility to each other, implementation within cultural and social contexts. Therefore, SSH research in the field of rare diseases is of crucial importance to help better understanding and better implementation of solutions for those living with a rare disease.

Call Objectives:  

Effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear future benefit for patients. 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 this leverages added value in sharing resources or expertise or has the capacity to elucidate common disease problematics.

Topic: Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease.

Call Options:

The following list of health-related Social sciences and Humanities (SSH) disciplines is used for definition (taken from the European Commission (EC) that was adapted from the UNESCO International Standard Classification of Education (ISCED 2011)):

• Social sciences, business and law
• Social and behavioral sciences: economics, management, sociology, anthropology, demography, geography, psychology, neuropsychology, cognitive science, human rights, law, political sciences, communication, and social studies of science and technology;
• Education science: educational research;
• Governance: public and institutional administration, social and health economic and systems, policy, and social policy.
• Humanities and the arts
• Humanities: cultural studies, linguistics, philosophy, ethics, and history.

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

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 costeffectiveness 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-year duration of the project, including realistic timelines for regulatory aspects like ethical approval etc. in different countries.

Duration: The maximum duration of the project is three years

Budget: Eligible costs and funding provisions may vary according to the respective funding organisation's regulations. Applicants must refer and adhere to their own specific national regulations and scientific remits as detailed in the National Announcements. Clarification may be obtained from the individual funding organisations.

-  Categories of partners

Partners belonging to one of the following categories may request funding under a joint research proposal (according to country/regional regulations):

• cademia (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). Participation of small and mediumsized enterprises (SMEs) is encouraged when allowed by national/regional regulations,
• patient advocacy organizations

Each consortium submitting a proposal must involve three to six eligible principal investigator partners (referred to as partners below) from at least three different participating countries. In specific cases this can be increased to eight partners. No more than two eligible partners from the same country can be present in each consortium; further national/regional limits may apply. PAOs requesting funding do not count toward this total.

The number of partners can be increased to 8 in two cases:

1. The inclusion of partners from participating countries usually underrepresented in projects (Slovakia, Hungary, Lithuania, Poland, and Turkey).
2. The inclusion of Early Career Researchers as full partners.

Participating Countries: Austria, Belgium; Canada; Estonia; France; Germany; Hungary; Israel; Italia; Lithuania; Luxemburg; Poland; Slovakia; Spain; Switzerland; Turkey.

There is a two-stage submission process. Applicants are strongly advised to contact their national representative as soon as possible in order to confirm their eligibility with their respective funding organisations.

Pre-proposals must be submitted using the electronic proposal submission link.

- Deadline for pre-proposals: 16/02/2021

- Deadline for full proposals: 15/06/2021 (only for pre proposals invited to second stage).

In case of interest, please contact lnorton(ELIMINAR)@fsjd.org