Understanding Your Participation in DuchenneConnect Australia

Introduction

DuchenneConnect Australia is an online registry established to help our community (including affected individuals, families, clinicians and researchers) learn more about Duchenne and Becker muscular dystrophy (DBMD), better manage symptoms over time, and develop new treatments. Save Our Sons, in partnership with Parent Project Muscular Dystrophy (PPMD) in the USA created DuchenneConnect Australia. Save Our Sons and PPMD are the joint guardians of DuchenneConnect Australia and its material.

DuchenneConnect Australia uses the infrastructure of DuchenneConnect – a patient registry that has been operated in the USA since 2007. The history of DuchenneConnect shows that registry information can be used to make the research and clinical trial process faster and more efficient. Registries in other diseases also have a long history of success in moving research and clinical care forward. However, the known benefits of the Registry to the DBMD community come with a small possibility of risk to individual participants.

This page explains the potential benefits and risks of joining the Registry and what you can expect as a result of your participation. Please read the information carefully and take as much time as you need before making a decision about participation. After you’ve read this page, you will be asked to respond to a series of statements about your participation in the DuchenneConnect Australia Registry. If you have questions, please feel free to ask us: you can email This email address is being protected from spambots. You need JavaScript enabled to view it. or call +61 (03) 8592 6431.

Who Can Join?

This Registry has been created specifically for individuals who have a diagnosis of Duchenne or Becker muscular dystrophy and for carriers (or possible carriers) of these conditions.

Parents and guardians of people with Duchenne/Becker muscular dystrophy may register on behalf of children and teens with Duchenne/Becker. Individuals who live with or care for adults with Duchenne/Becker muscular dystrophy may also help with Registry participation by answering questions on their behalf. Each registrant can only have one account in the Registry.

This Registry was designed for individuals in Australia. If you live outside Australia, click here to see if your country has a registry. If so, we encourage you to participate in your country’s registry, alternatively, DuchenneConnect in the USA accepts international registrants.

Joining Is Your Choice

Participation in the Registry is completely voluntary. It is your choice to participate. You may also stop participating for any reason and at any time. If you decide not to participate or if you decide later to withdraw from the Registry, we will not penalise you or ask you for an explanation. (However, we would welcome for your feedback so that we can continue to improve the Registry.)

If you decide to participate now but later wish to withdraw, you will need to contact the DuchenneConnect Australia Coordinator (This email address is being protected from spambots. You need JavaScript enabled to view it.) and we will no longer contact you. If you withdraw, you will be able to choose whether we can continue to use your clinical information that is already in our database, or whether you want us to remove all of your information from our database. No matter what option you choose, we cannot retrieve data that has already been used in research and/or provided to investigators before your decision to withdraw.

DuchenneConnect Australia's Purpose

The purpose of DuchenneConnect Australia is to help clinicians, pharmaceutical companies, and researchers better understand and manage Duchenne/Becker muscular dystrophy, and to learn more about the experience of living with Duchenne/Becker. The information that we collect allows DuchenneConnect Australia and researchers to learn more about the impact of Duchenne/Becker on individuals, families and caregivers. That information is also crucial to the process of developing new and improved treatments for Duchenne and Becker muscular dystrophy. DuchenneConnect Australia also offers you access to information regarding clinical trials and other studies for which people with Duchenne/Becker muscular dystrophy and their families may be eligible.

How Will Creating a DuchenneConnect Profile Affect Me/My Child?

If you choose to register, you will be asked to give information about yourself and/or your child. You will be asked to provide a medical history, along with information about medication use, your family history and your healthcare. You will also be asked to answer some standardised questions designed to measure different symptoms or effects. DuchenneConnect Australia will also ask you to provide important information from your medical record, such as genetic test results.

The Registration process generally takes at least one hour to complete. You do not have to enter all of the information at once and you can save what you have done and return to complete remaining questions at a later time.
After registering and creating a profile, you will be contacted by DuchenneConnect Australia from time to time and asked to provide more information (as described below). We will also send you educational information and information about research.

Providing More Information:
Updating your Registry
DuchenneConnect Australia will contact you to update your information. Up-to-date information about participants is crucial to the Registry’s ability to answer important research questions, to assess the feasibility of different types of research, and to identify individuals who may qualify for particular studies. To keep your information current, we will contact you periodically and ask you to update your profile information.

Answering new questions
As DuchenneConnect Australia continues to grow, new questions will be added to the current Profile surveys. Additionally, DuchenneConnect Australia will add new surveys and patient-report outcome measures on focused topics such as quality of life, behaviour and learning, and motor skills. At the beginning of each of these surveys, you will see a brief description and you will have the option to choose whether to complete the survey. You can view a current list of online surveys once you create and login to your DuchenneConnect Australia account.

Receiving More Information:
Once you are registered, you will have access to educational materials and tools on the DuchenneConnect Australia site. You will also be able to use DuchenneConnect Australia to get information about how other Registry participants experience the impact of Duchenne/Becker, which may be useful in understanding your own experience.

DuchenneConnect Australia will contact you, usually once a month, with email announcements and educational newsletters. We will also tell you about new research studies, clinical trials and upcoming activities and resources. You will also have access to the DuchenneConnect Coordinator(s) who can answer your questions and assist you with completing your Registry account.

How is my/my child's privacy and confidentiality protected?

Participating in a registry and registry research comes with a small risk that information about you will be disclosed to someone who is not authorised to see or have it. The Registry team has taken the necessary steps to reduce this risk and protect your information. The Registry is hosted by AltaVoice (previously called PatientCrossroads), a world leader in developing registry systems. AltaVoice complies with important research and privacy regulations for protecting patient data in research.

Your account will be protected by the username and password you select in setting up your account. All of the information you provide to DuchenneConnect Australia will be maintained in a secure database, and any information that could identify you and your family members will not be shared without your approval. Only the DuchenneConnect Australia coordinators and our technical team at AltaVoice have access to your identified information.

The data collected and compiled by this Registry belongs to the DuchenneConnect Australia community. Save Our Sons and PPMD are the guardians of the information contained within the Registry. Save Our Sons and PPMD staff who are not on the DuchenneConnect Australia team do not have access to the secure database that holds your names and medical information.

Your name and contact information will never be given to anyone without your permission. DuchenneConnect Australia is deeply committed to protecting your privacy and identity, and will use every available measure to ensure the security of your personal information. For more information, read our 'Frequently Asked Questions'.

Uses of Information in the Registry
The goal of this Registry is to make the information you provide widely usable, while protecting your identity. DuchenneConnect data is used in three ways:

1) To connect you with research

DuchenneConnect Australia works with researchers who have questions or studies and need volunteers. We never provide your name or contact information without your permission. Instead, we give you the power to decide whether to contact researchers to learn about their studies. We send you information about the study or project and tell you how to learn more. If you are interested in the study, you make contact with the researchers, who will determine whether you or your child is eligible to participate and answer any questions you may have about the research.

2) To help with research using de-identified data and information

Most of the time, in order to protect your privacy, DuchenneConnect Australia research uses de-identified data. This means that personally identifying identification, such as names and addresses, have been removed. 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.

DuchenneConnect Australia makes de-identified data gathered from the Registry available to the DuchenneConnect Australia community of registered patients, families, friends, caregivers, and clinicians and medical researchers, in the hope that this de-identified information will support research leading to better treatments and care management.

The registry team in consultation with our Registry Advisory Committee (see Registry Governance below) carefully reviews all requests for Registry data and determines the validity and importance to the community. If the request for data is approved, DuchenneConnect Australia provides de-identified data sets. Alternatively, the registry coordinators may analyse the data in the registry to give answers to specific questions and feed this back to the researchers. For example, a researcher might want to know how many individuals with Duchenne in NSW are between the ages of 5 and 10, or what proportion of patients in Australia are taking heart medication.

DuchenneConnect Australia will also report back to you about what questions are being studied and the value of the Registry in answering them.

Some de-identified information will also be shared with international registries with whom DuchenneConnect Australia collaborates to develop global knowledge that may lead to new research and thus to new or improved treatments. These databases are: the TREAT-NMD (TREAT-Neuromuscular Diseases) international database and DuchenneConnect (USA).

Benefits of Participating

Benefits to participating in DuchenneConnect Australia include:

  • helping to speed research in Duchenne/Becker muscular dystrophy by sharing your data;
  • access to up-to-date educational materials;
  • receiving notification of clinical trials and research studies that you or your child may be eligible for;
  • understanding how you or your child compares to others with the same condition;
  • having the opportunity to ask questions relevant to you that we can answer using the DuchenneConnect data.

Risks of Participating

Participating in DuchenneConnect Australia entails a small risk of unauthorized use of your information and data. If such an unauthorised use occurs, you will be immediately notified. If there is a breach in the security of AltaVoice, then all participants will be notified of the steps required to repair the breach and prevent its recurrence.

In addition to this risk to your privacy, there is also a small risk of psychological discomfort in answering questions about your experience with Duchenne or Becker’s muscular dystrophy. You are not required to answer these questions if doing so causes you discomfort.

Participation in the Registry entails no physical risks for you or your family.

Registry Governance

The DuchenneConnect Australia registry has a Registry Advisory Committee consisting of at least four key neuromuscular specialists/allied health professionals (such as neurologists, geneticist and neuromuscular specialist nurses) and at least two patient representatives (parents of individuals with Duchenne/Becker or adults with the condition). If you would like to know who is currently on the committee, please contact us. This committee oversees the running of the registry to ensure that it is serving in the best interests of the community. They are also consulted when applications for access to data from the registry are made.

The Bellberry Human Research Ethics Committee has reviewed this study in accordance with the National Statement on Ethical Conduct in Human Research (2007)-incorporating all updates. Should you wish to discuss the study or view a copy of the Complaint procedure with someone not directly involved, particularly in relation to matters concerning policies, information or complaints about the conduct of the study or your rights as a participant, you may contact the Committee chair, Bellberry Human Research Ethics Committee on +61 (03) 8361 3222
Do you have more questions? Click here to view our FAQ (Frequently Asked Questions) or contact us at This email address is being protected from spambots. You need JavaScript enabled to view it..

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