Frequently asked questions for professionals
How do I take part?
The registry curator will set up an account for you. From your account you will be able to see all the patients that have nominated you as their doctor. All patients will be able to see you listed when they register. After the initial set up you can login to the online portal at any time.
What will be expected if I take part?
You will be asked to complete some genetic information about your patients. You only need to do this once for each patient.
How do I know a patient has nominated me?
You will receive an e-mail from the registry curator, informing you a patient has selected you. You will then be able to log on an enter the required information.
I don’t recognise the named patient, what should I do?
If you do not recognise a patient that has nominated you as their specialist then please contact us.
Can someone enter the details on my behalf?
If for example, you would like a physiotherapist or nurse to enter the details on your behalf this can be arranged. Or you can arrange this internally as you see fit.
We would recommend the doctor’s name remain visible to patients when registering.
Do I need any approvals to take part?
The registry has received full ethical approval from Newcastle and North Tyneside 1 research ethics council (13/NE/0048). Some NHS trusts would like R&D and Caldicott to also be notified of the registry. Please contact the registry curator to see if this has already been done in your area.
How can I tell my patients about the registry?
We would encourage you to discuss the UK FSHD Patient Registry with any FSHD patients that you see. We can also provide a leaflet for distribution at clinics. Please contact the registry curator who will arrange for some to be sent to you.
If you are a doctor who is not currently involved with the Registry but see patients with FSHD then we would encourage you to contact us to discuss adding you to the Registry.