IRDiRC Recommended | IRDiRC

IRDiRC Recommended | IRDiRC

PATIENTS ADVANCING RESEARCH

Patient-driven initiatives and actions to foster rare disease research ‘IRDiRC Recommended’ - a new label system for tools that potentially contribute to the acceleration of rare disease R&D Goal of the “IRDiRC Recommended” label The International Rare Diseases Research Consortium (IRDiRC) was set up to accelerate R&D in the field of rare diseases diagnostics and therapies so as to ensure that most rare diseases will have a diagnostic test by 2020 and that at least 200 new therapies for these diseases will reach the market by that date. Among the many initiatives which were identified as key to contributing to such goals is the creation of a label to highlight key resources which, if used more broadly, would accelerate the pace of discoveries and translation into clinical services. Selected platforms/tools/standards/guidelines must be of fundamental importance to the rare diseases research and development community. “IRDiRC Recommended” is a quality indicator, based on a specific set of criteria. Any platform/tool/standard/guideline compliant with the criteria set forth is entitled to the label. “IRDiRC Recommended” is a public label which could, and should, be made visible on and by the resource, giving the users a certain guarantee of its quality/appropriateness. IRDiRC encourages the long-term sustainability of the tools/standards/guidelines and their societal value. Eligibility of application to obtain the “IRDiRC Recommended” label The application for “IRDiRC Recommended” is open to all project leaders wishing to obtain endorsement by IRDiRC of a platform/tool/standard/guideline that potentially contributes to the acceleration of R&D in the field of rare diseases. Commercial products are not eligible. Please return the IRDiRC Recommended application form to irdirc.recommended@irdirc.org The application and review process The application will be received and reviewed 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 is functional and accessible with minimal downtime has a development and maintenance team has clear terms-of-use, licence policies, well-documented, and adhere 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) Justification will be provided in the event of negative decision concerning the request for recommendation. The “IRDiRC Recommended” endorsement is valid for 3 years, upon which it will be re-reviewed for relevance and utility in contributing towards IRDiRC objectives. Visibility package The resources awarded the “IRDiRC recommended” label will be highlighted on the IRDiRC website, on the Orphanet website and in the OrphaNews. The resource portal and other communication supports will be allowed to make use of the “IRDiRC Recommended” logo.