Providing access to patients

Registry 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 ( Please use 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 ‘Require patient/parent access’.
  4. A textbox will open and the e-mail address of the patient/parent should be added.
  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 in read-only mode.
  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 be able to view their entire record in read-only mode.

Last Revised: 21st July 2023