Application for IRDiRC Recognized Resources label

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Eligibility to Obtain the IRDiRC Recognized Resources Label

The application for IRDiRC Recognized Resources is open to all resources wishing to receive endorsement for their platform/tool/standard/guideline’s contribution 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

Applications will be received and reviewed by members of IRDiRC Scientific Committees on an ongoing basis. The criteria 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
scisec-irdirc@ejprarediseases.org

Label Visibility

Resources receiving the IRDiRC Recognized Resources label will be highlighted on the IRDiRC website, newsletter, and in OrphaNews. Approved resources will be allowed to make use of the IRDiRC Recognized Resources logo.