Frequently asked questions
To get started, please contact us so we can create your clinician account. Our registry team will then send you an invitation link, allowing you to set your password and access the system.
Once your account is active, you will be able to view all patients who have nominated you as their doctor. Your name will also be visible to patients when they register with the registry.
After the initial setup, you can log in to the online portal at any time to access and manage your information.
You will be asked to complete some clinical and genetic information about your patients. You can view the details you will be asked here
Yes, if for example, you would like a physiotherapist, nurse or assistant to enter the details on your behalf this can be arranged. We can connect one or more users to your account who can granted access to the registrations. Please contact us to have more users connected to your account.
The doctor’s name remains visible to patients when registering.
You will receive an e-mail from the registry, informing you a patient has selected you. You will then be able to log on and enter the required information.
If you do not recognise a patient that has nominated, you as their specialist then please contact us so we can discuss the situation with the patient.
We would encourage you to discuss the Global FKPR Patient Registry with any patients with FKPR related conditions that you see. You may also find our leaflets, available in nine different languages, or the Global FKRP Registry Postcard helpful.