FAIR Guiding Principles among the IRDiRC Recognized Resources
The FAIR Guiding Principles have received the label IRDiRC Recognized Resources! We would like to congratulate the RD-Connect-supported group of FAIR experts and rare disease experts who prepared this application. This is the first success of this group that is preparing a so-called ‘GO FAIR implementation network’, which brings together FAIR experts, data analytics experts, and stakeholders from the rare disease community who would like their data to be as Findable, Accessible, Interoperable, and Reusable (FAIR) as possible. The basis is the ‘rare disease data linkage plan’ that is supported by RD-Connect, BBMRI, ELIXIR, and rare disease stakeholder. It aims to turn rare disease data resources (registries, biobanks, molecular data sources), into FAIR resources one by one, while contributing to technology, protocols, and shared expertise to FAIRify rare disease resources efficiently.
We also congratulate RD-Connect partners the Leiden University Medical Center (LUMC) and the University Medical Center Groningen (UMCG), who were involved in drafting the FAIR Guiding Principles, and all those involved in rare disease ‘Bring Your Own Data’ workshops, which significantly influenced the development of the FAIR Guiding Principles.
The International Rare Disease Research Consortium (IRDiRC) has created the label Recognized Resource (formerly known as IRDiRC Recommended) to highlight resources of fundamental importance to the international rare diseases research and development community. If used broadly, the recognized platforms/tools/standards/guidelines advance research and clinical services for rare diseases.
The FAIR Guiding Principles are the third output created with the support of RD-Connect endorsed by IRDiRC. The first one – the International Charter of principles for sharing bio-specimens and data – has been awarded the label in 2015. The second one – the RD-Connect guidelines for informed consent process – have been endorsed in 2016.