Frequently Asked Questions for Professionals

How do I take part?

The registry team will send you an  invitation link in an email – please contact us if you have not received this. From your account you will be able to see 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 clinical and genetic information about your patients. You can view the details you will be asked here.

How do I know a patient has nominated me?

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 verify or enter their 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 you can easily report this via the registry. See the clinical user guide for further information.

Can someone enter patient details on my behalf?

Yes, you can add members of your clinical team to help manage your patient list and support data entry. You can invite them yourself via your registry account (see clinical user guide for instructions). All registry users must have their own individual user account – you should not share your login details with anyone else. 

Do I need any approvals to take part?

The registry has received full ethical approval from Newcastle and North Tyneside 1 research ethics council. 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. You are welcome to download, share and print copies of our current registry resources from the ‘leaflets’ page in the ‘Registry Activities’ section of this website. We can also provide printed copies of the registry leaflet and postcard for distribution at clinics – please request these here.