Share4Rare Open Call for Patient-Driven Research Projects

Donor Name: Share4Rare

Country: Global

Type of Grant: Event

Deadline: 09/30/2023

Size of the Grant: 30,000 EUR

Details:

The mission of Share4Rare (S4R) is to enhance research in rare diseases by generating knowledge collaboratively. Conceived as a platform for interaction between patients and caregivers, S4R promotes communication between users who share needs, doubts and daily challenges.

Share4Rare is particularly interested in supporting projects, whether qualitative or quantitative, that contributes to a deeper understanding of rare diseases. These projects may focus on various aspects, such as the impact of the disease on the quality of life for individuals affected by or living with it, the description of the disease’s natural history, the evaluation of specific treatment side effects, the prognosis of the disease, or even the creation of patient registries.

Throughout the entire research process, the Share4Rare team will provide comprehensive assistance. This includes support in presenting the project to the Ethics Committee, continuous accompaniment of patients throughout the study, and the provision of a results report to facilitate subsequent publication.

They believe that by collaborating and leveraging the expertise of both patient organisations and research groups, they can make significant advancements in rare disease research.

Objective

The objective of this Call is to select 2 research projects to be co-implemented and developed on the Share4Rare platform.

Funding Information

The estimated cost of a research project is 30,000 EUR per year, although it may vary upon the particular conditions of the project. Whatever the cost is, FSJD will co-finance 50% of the expenses related to the management of the research project, up to a maximum of 15,000EUR.

Research Topics

Whether qualitative or quantitative research, the projects that Share4Rare encourages are those that facilitate the understanding of aspects of the rare disease such as its impact on the quality of life of people who suffer from it or who live with it, the description of the natural history of the disease, the side effects of specific treatments, the prognosis of the disease, etc.

Eligibility Criteria

Patients’ organisations or academic institutions and other related stakeholders interested in promoting research in which patients are key for the gathering of relevant information about the rare disease.

• What will the applicants have access to if their application is selected?
  • Participate and promote research with a patient-centred approach.
  • Use Share4Rare to collect clinical data and information delivered by patients and caregivers.
  • Access to services for data study and analyses.
  • Access to support of a team specialized in collaborative scientific initiatives in the field of rare diseases.
  • Access to basic tools such as forms, models, validated scales, guidelines and support material for enhancing citizen science projects
  • Language of the application
  • Proposals must be written either in Spanish or in English.

For more information, visit Share4Rare.