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Eligibility to Obtain the IRDiRC Recognized Resources Label
The application for IRDiRC Recognized Resources is open to all project leaders wishing to get endorsement by IRDiRC of their platform/tool/standard/guideline which contributes to the acceleration of research and development in the field of rare diseases.
Type of eligible resources:
- Software, bioinformatics platforms, webservices
- Data collections / biospecimen collections
- International standards
- International guidelines
The following resources, although acknowledged as very important, are excluded from this process:
- National, regional or institutional biobanks for rare diseases or a single disease entity
- National, regional or institutional registries for rare diseases or a single disease entity
- Resources with some utility for rare diseases research but primarily designed for broader use (e.g. informatics suites for the interpretation of genomic variants)
- Commercial resources
Applying for IRDiRC Recognized Resources
Criteria to be Fulfilled
The application will be received and reviewed by members of IRDiRC Scientific Committees on an ongoing basis. The criteria which will be used to assess the relevance of the candidate resource are the following:
- must be within IRDiRC’s focus and mission (mandatory)
- has multi-national connectivity and audience (mandatory)
- is functional and accessible with minimal downtime
- has a development and maintenance team
- has clear and well-documented terms-of-use and license policies
- adheres to all relevant ethical and privacy policies and requirements
- has a process in place for quality control and life cycle management
- undergoes scientific peer review
- is financially viable for the following 3 years
- documents its core impacts (e.g. number of users, number of visits, etc)
- demonstrates relevant and ongoing activity in sharing and dissemination
Not all criteria are applicable to all candidate resources, except for the first two mandatory ones.
The IRDiRC Recognized Resources endorsement is valid for 3 years, upon which it will be re-reviewed for relevance and utility in contributing towards IRDiRC objectives.
To apply for the “IRDiRC Recognized Resources” label, please return the “IRDiRC Recognized Resources Application Form” to contact[a]irdirc.org
The resources awarded the “IRDiRC Recognized Resources” label will be highlighted on the IRDiRC website and in the OrphaNews. The resource portal and other communication supports will be allowed to make use of the “IRDiRC Recognized Resources” logo.