Registration
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Account Registration

The registration process consists of two steps:

  • Creation of your account
  • Logging into the registry and completing your profile

After creating your account, you must log in to complete the registration process.
 

Account Holder

The person entering the data
* This Field is required Information for: Your First Name : Your first name, or the primary contact for the registrant.  If you are a parent registering a child, this is your name, NOT your child's name.
* This Field is required
Information for: Your Relationship to Participant : <p>Please tell us how you are related to the participant.</p>
* This Field is required Information for: Email : Please enter a valid e-mail address. A confirmation email will be sent to this address upon registration.
* This Field is required Information for: Confirm Email : <p>Please confirm your email address by entering it again.</p>
* This Field is required Information for: Username : Please enter a valid username.  No spaces, at least 3 characters and contain 0-9,a-z,A-Z
* This Field is required Information for: Password : Please enter a valid password.  No spaces, at least 8 characters and contain at least 1 lower-case letter, 1 upper-case letter, 1 number, and 1 symbol character
* This Field is required Information for: Verify Password : Please enter a valid password.  No spaces, at least 8 characters and contain at least 1 lower-case letter, 1 upper-case letter, 1 number, and 1 symbol character
* This Field is required

Consent


My consent to participate in the DuchenneConnect Australia Registry

Who can provide consent?

Patients over the age of 18 who understand the consent form (and do not have a legal custodian) are eligible to join the Registry on their own. Otherwise, the legal guardian, parent, or custodian of the patient must sign the consent for the patient to join. When the patient becomes 18, if the patient is able to provide informed consent and the patient no longer wishes to participate in the Registry, the patient may choose to contact the Registry Coordinator and withdraw their consent. If the patient is between 10 to 17 and is able to understand the idea of participating in a registry, he or she must give assent (agree) to be included in DuchenneConnect Australia. An information sheet for 10 to 17 year olds is available here.

Please print this form and keep a copy for yourself.

Please indicate that you have reviewed and understand the “Understanding Your Participation” page and that you do not have any questions about your participation in the Registry. If you still have questions, before you check boxes and move on please contact the Registry Coordinators at coordinator@duchenneconnectaustralia.org.au.

 

Who can provide consent?

Patients over the age of 18 who understand the consent form (and do not have a legal custodian) are eligible to join the Registry on their own. Otherwise, the legal guardian, parent, or custodian of the patient must sign the consent for the patient to join. When the patient becomes 18, if the patient is able to provide informed consent and the patient no longer wishes to participate in the Registry, the patient may choose to contact the Registry Coordinator and withdraw their consent. If the patient is between ages 10 to 17 and is able to understand the idea of participating in a registry, he or she must give assent (agree) to be included in DuchenneConnect.

Please print this form and keep a copy for yourself. To print the first page of the consent and/or the Participation FAQ, please go back to those pages and select "Print" at the top right hand corner of those pages.

Please indicate that you have reviewed and understand the "Understanding Your Participation" page and that you do not have any questions about your participation in the Registry. If you still have questions, before you check boxes and move on please contact the Registry Coordinators at coordinator@duchenneconnect.org.

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If you are registering a child between 10-17 years of age: 

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Please enter the code below in all lowercase letters to confirm your registration. Phones and tablets may default the first letter to uppercase, only lowercase letters are accepted.

Image with security code embedded in itclick here to hear the letters
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* This Field is required Required field | Information for: ? : Field description: Move mouse over icon Information: Point mouse to icon