Participant (Patient) Access – Step-by-step guide
Registry participants or their guardian (if under 16) are able to access a portion of their record on the I-DSD/I-CAH/ I-TS Registry. Access to the anonymised data is via a secure login page on the Registry website (registry.i-dsd.org or registry.i-cah.org). Access is set up according to 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 ‘PROVIDE PARTICIPANT ACCESS’.
- The portion of the record that the participant can view will appear and the clinician should enter the participant’s e-mail address in the box and click ‘Provide Participant Access’.
- 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.
- For access at other times, use the following link: http://registry.i-dsd.org/patient/index.action 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 Manager Jillian.Bryce@glasgow.ac.uk
Once access has been provided to the patient participant they will see a view like this and will be able to choose a preferred language: