The three options for obtaining consent to enter clinical data into the Core Registry:
Option 1 – If you want to provide the patient access to the registry, use the EuRRECa Information Sheets & Opt-In Consent Forms that have been developed for the EuRRECa Core Registry.
Option 2 – Use the ERN Information Sheets & Opt-In Consent Forms that have been developed for general use for all ERNs. However, this will allow limited registry functionality
Option 3 – Use Opt-Out Consent that has been developed locally. However, this will allow limited registry functionality.
Patients can contact their clinicians to see the data that have been entered in the Registry. Patients can access their own data and online select their own preferences. For online access, patients will need to provide their email address to their clinician. This is captured on the EuRRECa consent form.
For further queries or to make any suggestions for improvement please contact firstname.lastname@example.org.