Published November 17, 2025 | Version v1
Publication Open

Adding Data Visitation language to ICFs

  • 1. Lifetime Omics
  • 2. ROR icon Washington University in St. Louis

Description

Incorporating Data Visitation language into an Informed Consent Form (ICF) requires clear, non-technical language that explains the concept and, importantly, how it benefits the participant by protecting their privacy. This document contains instructions and helpful information on how to do so including proposed language for additions to the ICF, structured to fit within a standard ICF format for two sections: Confidentiality and  Data Handling. When re-using, remember to adapt this language to the specific details of your study, including the type of data, where it’s stored, and the specific platform used.

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AddingDVlanguagetoICFsv1.1c.pdf

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Additional details

Funding

European Commission
RDA TIGER - Research Data Alliance facilitation of Targeted International working Groups for EOSC-related Research solutions 101094406

Dates

Submitted
2025-11-17
Submitted as RDA WG Supporting Output