Table 3.

Dynamic consent content

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