Selection of research projects based on patient-reported data 2025
Under the new Share4Rare service portfolio and to encourage research on rare diseases, we are now accepting proposals to implement research projects on the platform.
This process is open to patient organisations, research groups, academic entities involved in rare disease research, or scientific companies (biotechnology, pharma, etc.). It welcomes projects in which the patient or their caregiver plays a key role in collecting relevant information about the disease.
Research services to implement the projects
The Share4Rare platform provides a secure and private infrastructure for collecting these data. Additionally, the Share4Rare team offers professional support throughout the project implementation and development. This support will align with the contracted research services, which include the following key offerings:
- Advice on the design of the study with the support of a team of researchers from the Sant Joan de Déu Research Institute:
- Support defining the hypothesis and objectives of the studies
- Identification of the sample size and statistical variables
- Design of tailored questionnaires
- Support the request for approval by the Ethics Committee of the Sant Joan de Déu Research Foundation.
- Implementation of the questionnaires and scales in different languages
- Support in the recruitment of participants
- Providing a secure environment for the collection of patient data and clinical imaging data
- Providing statistical analysis services and support in the interpretation of the results
- Advice and support in the dissemination of the results to the participants
- Support in the writing of scientific publications on the study
Types of research 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
Deadline for submission, evaluation and selection
This process will open on February 24th 2025, and close on May 30th 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.
The following links provide information on:
- 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
