International Rare Disease Consortium

We would like to alert you to an International Rare Diseases Research Consortium supported initiative towards establishing a robust standard for digitally structuring and representing consent and data use conditions in the biomedical domain.  

The aim is to produce a standard machine-readable format that will be based on existing ontologies. It should meet the needs of use cases such as the creation of consent forms, unambiguous representation of use conditions, communicating permitted forms of use for data/samples, enabling data discovery, and automating data sharing decisions.  

Many institutions and projects struggle with such challenges in the work of their data access committees, legal teams, and privacy offices, etc. They may make use of ontologies, such as the Data Use Ontology (DUO) and the Disease Ontology (DO), but lack any standardized way to digitally structure and nuance the consents, use conditions, licenses, etc, that they need to manage.  

Therefore, we would like to invite you to join the development team for this initiative, starting with a teleconference to discuss possible solutions. In addition to IRDiRC, this initiative involves groups from the EJP RD project, the European 1 Million Genome Initiative, and ELIXIR. All inputs will be voluntary and fully acknowledged, leadership on subtopics will be appreciated, synergies with other efforts will be critical, and all outputs shall be published and fully open source.

If you would like to explore participating in this, please RSVP to and we will invite you to the first bi-weekly meeting of this group.  

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