Frequently Asked Questions

How does the Registry protect the confidentiality of participants?

Your account will be protected by the username and password you select in setting up your account. The Registry has to follow rules to protect information about you. Federal and state laws also protect your privacy.

Only the Registry coordinators, and key staff at Invitae have the ability to see your personal information.

Upon registering, the Registry will assign you a unique numeric identifier. This number will be used in place of your identifying or personal information when researchers access the Registry. Any information that could identify you and your family members will not be shared without your approval.

What is the process I’ll go through if I choose to participate in the Registry?

  • Carefully read the "Understanding your Participation" section of the consent form. Contact us with any questions or concerns.
  • If you are an adult registering a child who is between the ages of 10 and 18, you must get the child’s assent to participate (their verbal permission), unless the child is unable to provide assent.
  • If you are an adult acting on behalf of an individual who is 18 years or older who cannot make decisions for him/herself, you should have documentation of your authority to do so, for example, a court-appointed guardianship or advance directive.
  • If you are an adult who is physically unable to enter your own data, you can appoint someone to enter data on your behalf with your input.
  • You will indicate that you agree to participate in the Registry by providing your name, contact information, and today’s date on the My Consent page.
  • You will be asked to print the signed consent form to keep a copy for yourself.
  • You will be asked to provide basic contact information and to create a username and password to access the online Registry. A confirmation email will be sent to you.
  • When you log into the Registry, you will be asked to complete three or more surveys. These include questions about clinical information, diagnoses, and experiences with Duchenne/Becker.
  • You may take as much time as you need to complete the surveys. You can complete them at your own pace and can save what you have completed so that you can return to complete remaining questions at a later time.
  • You will be asked to upload attachments to the Registry or otherwise allow us to access some pieces of information from your medical records. These may include genetic reports, medications, and heart and lung tests. We will provide you with more information on how you can obtain this information for the Registry after you have agreed to participate.
  • The Registration process generally takes at least one hour to complete. You do not have to enter all of the information at once and we are here to help you.

What if I register myself/my child in more than one registry/database?

You may participate in more than one registry. The Duchenne Registry Australia explores and pursues opportunities to coordinate efforts with other registries. To identify registrants participating in more than one registry and to ensure effective coordination, The Duchenne Registry Australia uses certain checks and safeguards and always seeks to ensure the protection of your personal information As a parent/guardian, how deeply should I involve my child in the registration process? Every participant in this Registry should be well informed about the Registry, its purposes, and about the benefits and risks of participation. As previously noted, if you are a parent or legal guardian of a child who is between 10 and 18 years of age, you should ask for the child’s assent to participate in this registry. We recommend that any individual over the age of 18 register for himself, unless the parent or guardian maintains legal guardianship. Adult individuals with Duchenne/Becker muscular dystrophy may still need help completing the registration and answering the questions; there is no problem with another adult providing that help.

Will I be expected to provide the Registry with additional information in the future?

Yes. The Registry is most valuable for scientific research when it includes data important to emerging research questions, and when the data are kept up-to-date. Therefore, you will be asked to update your information from time to time. The Duchenne Registry Australia will send out notifications during the course of the year to remind you to add to and update your information. The Registry can also be updated whenever there is a change to a Registry question, such as a gain or loss of skill, change in medications, or new symptom.

Will I receive compensation for participating in the Registry?

You do not usually get compensation (money or gifts) for participating in the The Duchenne Registry Registry. For some research studies that have gained approval by an ethics board, reasonable compensation may be provided to families for time spent completing additional questionnaires or uploading information to the Registry. In addition, The Duchenne Registry Australia conducts raffles where individuals who register, complete particular surveys, or share particular reports may be eligible to win a non-monetary prize or a gift card.

Will it cost me anything to participate in this Registry?

No.

How is The Duchenne Registry financially supported?

The Duchenne Registry Australia is a program of Save Our Sons. Parent Project Muscular Dystrophy in the USA has partnered with Save Our Sons to set up The Duchenne Registry Australia and provide support to Save Our Sons in running the registry.

The Duchenne Registry Australia is supported by Save Our Sons and by grants and awards. In addition, there is a fee for some data access and recruitment services, which helps to offset part of the cost of running the Registry. The Duchenne Registry Australia accepts donations to the Registry (please visit our homepage for information on making a donation). 

I want to be involved in a clinical trial. If I register, is this guaranteed?

One of the main goals of the Registry is to make it easier for patients to participate in research, but there is no guarantee that that you or your family member will be eligible for a trial.

Some important notes:

  • Even if the researchers believe that you might be eligible for the study, based on the data about you stored in the Registry, it is still possible that at a later date you may no longer meet the inclusion criteria.
  • Also, you may appear not to be eligible for a study even when you are, if the answers to your Profile Survey are not up-to-date (genetic test results, mobility, and steroid use questions are particularly important).
  • Even if The Duchenne Registry Australia informs you about the existence of a research study, this does not imply that we endorse it.
  • In order to participate in any study, you will need to fill out a separate informed consent form as part of that study.

I don’t want to be involved in a clinical trial. Should I still register?

Absolutely. We hope that you will still be willing to register, even if you don’t want to take part in a trial. Your information will still be useful to researchers who are trying to learn more about people with Duchenne or Becker muscular dystrophy and how to best manage symptoms over time.

Why is the consent document so long?

Ideally, informed consent is obtained in person after a conversation with a researcher or healthcare professional. Since we cannot meet with each potential registrant in person, we have written a document that explains the purpose of the registry, highlights the benefits and risks of participating, and tries to address all possible questions and concerns.

I’ve lost the password for my account, what should I do?

Please do not create another account, click on the forgot username / password to recover your details. If you’re still having trouble, contact us using the details at the bottom of this page.

Can different family members create accounts for my son?

It may be desirable for another family member – a grandparent of the child for example – to create another account for your child so that he/she can keep track of his progress and keep up-to-date but we ask that you please avoid doing this. Duplicate accounts cause problems when analysing the data in the registry. Contact us using the details at the bottom of the page if you would like to discuss this.

Why does some of the content in the registry seem American?

The Duchenne Registry Australia has been built using the established and successful infrastructure of the US The Duchenne Registry Registry. We have customised our registry as much as possible to make it relevant for Australians, but it was not possible to change everything, such as American spelling of some words. Rest assured that the registry is for Australians and will be used for the benefit of people with Duchenne and Becker in Australia.

What is the easiest way to upload my documents/medical reports?

Uploading reports such as genetic test results to the registry is an important step in registering on The Duchenne Registry Australia. This information is very valuable to researchers. There are many ways you can upload your reports – one of the easiest is to take a photo of the report with your smart phone, log in to your account and upload the photo. Alternatively, you can upload a scanned copy to your account, or email or fax a copy to us and we will upload it for you.

Documents you send us will not be stored locally - as hard copies or on a computer - they will be destroyed as soon as they are uploaded into the secure registry.

How do I make a complaint?

If you think your privacy has not been protected, first complain directly to The Duchenne Registry Australia (contact details below). If you do not receive a response within 30 days, or you are dissatisfied with the response, you may then complain to the OAIC here.

Contact:

The Duchenne Registry Australia Coordinator

This email address is being protected from spambots. You need JavaScript enabled to view it. or Phone: 1800 940 492