Patient participants or their guardians are able to access their record in the Registry. Access to the data is via a secure login page on the Registry website (https://registry.sdmregistries.org/auth/login). Please use the following step-by-step process.
- At the clinical centre where the participant is registered, the participant or their guardian should complete the relevant section of the Consent Form (‘I request access to my own record Y/N’) with the assistance of the clinician.
- The clinician shall record the e-mail address of the participant on the consent form.
- In the registry, the clinician shall open the participant’s record and select ‘Require patient/parent access’.
- A textbox will open and the e-mail address of the patient/parent should be added.
- An e-mail will be sent to the participant confirming the user account with an activation link.
- Upon following the activation link, the participant will be prompted to create a password.
- The participant’s record will be immediately available to view in read-only mode.
- For subsequent access, use the following link: https://registry.sdmregistries.org/auth/login and insert username (e-mail address) and password.
- Queries relating to the record should be directed to the clinician at the clinical centre in the first instance.
- Queries relating to the Registry, or assistance with the participant access process, should be directed to the Project Support Team (info@sdmregistries.org)
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