Information for 10 to 17 year olds

You are being asked to be in this registry because you have Duchenne or Becker muscular dystrophy. This form explains the registry. After reading this form, you can decide to be in the registry, or you can decide not to be in the registry. Either choice is OK. 

If you have any questions or if there is anything you do not understand, you or your parents can contact the registry coordinator at any time.  

What is The Duchenne Registry Australia?

The Duchenne Registry Australia is a patient registry. Patient registries collect information about people’s health, especially if they have a medical condition like muscular dystrophy.

To take part in the registry, we are inviting you to give information about yourself, and how Duchenne or Becker muscular dystrophy affects you. We are also asking you to allow your parent or guardian to give information about your condition to this registry. All Australian children, teenagers and adults with Duchenne and Becker muscular dystrophies will be invited to take part. This will help doctors discover more about these conditions and new ways to treat them.

If you decide to be in the registry, and later change your mind, you may stop at any time.

What kinds of things will you do if you join the The Duchenne Registry Australia registry?

Your parent or guardian will help you answer questions online about you and your health. You and/or your parent or guardian will be asked to go back to the registry website and update your details from time to time.

If you need help, you may contact the The Duchenne Registry Australia registry coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it. or by calling 1800 940 492.

When will my participation in The Duchenne Registry Australia end?

We will be using your information for many years to come.  You may choose to stop at any time and when you turn 18 we will contact you to ask if you still want to take part.

Who will see this information?

Your information will be kept private and only be seen by you, your parents or guardian and people who run the The Duchenne Registry Australia registry.  Doctors and scientists studying Duchenne and Becker may be given access to some of your information but it will not have your name on it, or anything else such as your address that could be used to identify you.