Completing the questionnaires

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


My doctor is not listed.

If your doctor is not listed then you should contact us. Please give us the full name of your doctor and provide their contact details. We will contact them on your behalf and ask them to take part.

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

If you are unsure about the type of muscular dystrophy you have then you can select “I don't know”. We would ask that you consult with your specialist doctor to find out which type of FSHD you have been diagnosed with. If you have never had a genetic test you can also discuss this with your doctor.

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 recive 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.