Page Comparison

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The development of this ICF benefited from previous experience with ICF submissions by 4 ERN Registries (ERKReg, EuRRECa, ENROL, VASCA) and from the utilization of “machine-readable” consent-related Ontologies (Data Use Ontology and Informed Consent Ontology). Several iterative expert reviews (including patient organizations and ERN representatives) were conducted to finalize the ICF.

Some potential sources: 

• ELSI Servicedesk? Unfortunately in Dutch.

• Templates for ICs?

• https://www.uu.nl/en/research/research-data-management/guides/legal-considerations/how-to-write-an-informed-consent-form

• https://www.eur.nl/en/research/research-services/research-quality-integrity/ethical-review/informed-consent

• https://rdmkit.elixir-europe.org/human_data

• https://rdmkit.elixir-europe.org/ethics

• HANDS, chapter privacy and autonomy has a section about IC

• https://the-turing-way.netlify.app/ethical-research/ethical-research

Expertise requirements for this step 

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