Completing the questionnaire

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

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 project coordinator 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 every six months. You will receive an e-mail reminding you to do this. You can however log on and update the information at any time.


You can view the questionnaires you will be asked to complete before joining the DMD Hub Central Recruitment Pilot Project. If you have any questions please contact us.

The questions we will ask fall in to the following categories:

  • Personal data
  • Diagnosis
  • Motor function
  • Wheelchair use
  • Medication
  • Participation
  • Existing registrations