Completing the questionnaires

Here you will find more information to help you complete the questionnaires.

Read the step-by-step registration user guide for patients

My doctor is not listed.

If your doctor is not listed then please choose 'no selection' at the end of the list of doctors, then contact us with the full name of your doctor and any contact details you have for them. We will contact them on your behalf and ask them to join the registry as a professional user.

I don’t know what type of FSHD I have. I have never had a genetic test.

We would ask that you consult with your specialist doctor to find out which type of FSHD you have been diagnosed with. They will be able to refer you for a genetic test if required, further information can be found on the NHS website here. You can still join the registry if you are not sure which type of FSHD you have, but we would ask that you update your information when this information becomes available.

I have entered some information incorrectly and cannot change it.

You should be able to change your information (other than name and date of birth) at any time. However if you have any trouble updating your information then please contact the registry curator who will be able to help further.

I don’t understand some of the questions

If you are unsure about the questions being asked in the registry then please contact us for more information. You can also discuss anything you are unsure of with your doctor. We also have a glossary which might explain any terms that are not clear.

How often do I have to update the information?

We will ask you update your information once every year. You will receive an e-mail reminding you to do this. You can however log on and update the information at any time.

I am not happy with the information entered by my doctor.

If you are unhappy with this information you should contact your doctor to discuss your concerns.

I have another question or problem

Please contact the registry curator who will be able to help you.