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Table 3 Dynamic consent content

From: The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

Data use preferences
Primary data use
- data that have already been submitted
- data that will be submitted
Clinical data (e.g., diagnosis, laboratory data)
- data that have already been submitted
- data that will be submitted
Secondary data use
- by researchers in non-profit institutions
- by researchers in for-profit institutions
Links to other data
- to other familial data
- to the data collected in other research
Contact from the office
Notification about questionnaire assignment
Dissemination of research progression
Re-contact for ethically approved studies