Providing access to patients

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/CAH Registry.  Access to the anonymised data is via a secure login page on the Registry website ( or ).  Access is set up according to the following step-by-step process.

  1. 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.
  2. The clinician shall record the e-mail address of the participant on the consent form.
  3. In the registry, the clinician shall open the participant’s record and select ‘PROVIDE PARTICIPANT ACCESS’.
  4. 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’.
  5. An e-mail will be sent to the participant confirming the user account with an activation link.
  6. Upon following the activation link, the participant will be prompted to create a password.
  7. The participant’s record will be immediately available to view.
  8. For access at other times, use the following link: and insert username (e-mail address) and password.
  9. Queries relating to the record should be directed to the clinician at the clinical centre in the first instance.
  10. Queries relating to the Registry, or assistance with the participant access process, should be directed to the Project Manager

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: