New deadline for sending your research proposal based on patient-reported data
In response to inquiries and requests from those interested in this year's projects' selection, Share4Rare extends the deadline to August 31, 2025.
Types of projects
Studies will be conducted on a specific rare disease or across a group of diseases. Projects may focus on collecting either quantitative or qualitative data.
By meeting the requirement to gather patient-reported data, the projects can vary in nature, including:
- Patient registries or observatories
- Description of the natural history of the disease
- Analysis of the burden of the disease
- Creation and/or validation of scales
- Study of the quality of life of patients and/or their caregivers
- Correlation studies between data reported by patients and clinical image data
Evaluation and selection process
This process will remain open until August 31st 2025.
This is not a competitive process; all projects that meet the outlined requirements and submit the necessary documentation within the established timeframe will be evaluated.
The final definition of the services required for each project will be agreed upon jointly by the Share4Rare team and the requesting entity.
After the project's initial evaluation and any necessary meetings to discuss the collaboration terms, a service proposal and budget will be provided for the requesting entity's approval. A financial commitment letter will also be required.
More information:
- Project Selection: Why Share4Rare?, Services, Application Calendar
- Research Proposal Form: Project Description
- Financial Commitment Letter: This document ensures the coverage of expenses related to the services contracted by the requesting organisation.
- Share4Rare Research Services Portfolio
