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.
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Information for: Your Relationship to Participant : <p>Please tell us how you are related to the participant.</p>
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My Consent


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 The Duchenne Registry Australia. An information sheet for 10 to 17 year olds is available here.

 

 Please print this form and keep a copy for yourself.

 

 Understanding Your Participation in The Duchenne Registry Australia

Introduction

The Duchenne Registry 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 The Duchenne Registry Australia. Save Our Sons and PPMD are the joint guardians of The Duchenne Registry Australia and its material.

The Duchenne Registry Australia uses the infrastructure of The Duchenne Registry – a patient registry that has been operated in the USA since 2007. The history of The Duchenne Registry 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 Duchenne Registry Australia Registry. If you have questions, please feel free to ask us: you can email coordinator@duchenneconnectaustralia.org.au or call 1800 940 492.

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, The Duchenne Registry 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 Duchenne Registry Australia Coordinator (coordinator@duchenneconnectaustralia.org.au) or call 1800 940 492 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.

The Duchenne Registry Australia's Purpose

The purpose of The Duchenne Registry 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 The Duchenne Registry 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. The Duchenne Registry 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 The Duchenne Registry 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. The Duchenne Registry 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 The Duchenne Registry 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
The Duchenne Registry 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 The Duchenne Registry Australia continues to grow, new questions will be added to the current Profile surveys. Additionally, The Duchenne Registry 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 The Duchenne Registry Australia account.

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

The Duchenne Registry 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 Duchenne Registry 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 Invitae (previously called PatientCrossroads), a world leader in developing registry systems. Invitae 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 The Duchenne Registry 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 Duchenne Registry Australia coordinators and our technical team at Invitae have access to your identified information.

The data collected and compiled by this Registry belongs to The Duchenne Registry 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 Duchenne Registry 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. The Duchenne Registry 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. The Duchenne Registry data is used in three ways:

1) To connect you with research

The Duchenne Registry 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, The Duchenne Registry 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.

The Duchenne Registry Australia makes de-identified data gathered from the Registry available to The Duchenne Registry 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, The Duchenne Registry 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.

The Duchenne Registry 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 The Duchenne Registry 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 The Duchenne Registry (USA).

Benefits of Participating

Benefits to participating in The Duchenne Registry 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 Duchenne Registry data.

Risks of Participating

Participating in The Duchenne Registry 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 Invitae, 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 Duchenne Registry 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 coordinator@duchenneconnectaustralia.org.au or call 1800 940 492.

 

Please indicate that you have reviewed and understand the "Understanding Your Participation" information presented above 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 or call 1800 940 492.

 

 You must check all of the boxes to register.

 

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 The Duchenne Registry.

Please print this form and keep a copy for yourself. To print the Participation Q&A, please go here and select "Print" at the top right hand corner of the page.

Please indicate that you have reviewed and understand the "Understanding Your Participation" content below and  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@duchenneregistry.org.

Understanding Your Participation

Introduction

The Duchenne Registry is an online registry established to help our DBMD community (including affected individuals, families, clinicians and researchers) learn more about Duchenne and Becker muscular dystrophy, better manage symptoms over time, and develop new treatments. The Duchenne Registry is a program of Parent Project Muscular Dystrophy (PPMD). PPMD is the sole guardian of The Duchenne Registry and its material.

The Duchenne Registry's history shows that the 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. You’ll be able to decide whether you wish to participate in the The Duchenne Registry. If you have questions, please feel free to ask us: you can email coordinator@duchenneregistry.org or call 888-520-8675.

Who Can Join?

This Registry has been created specifically for individuals who have a diagnosis of Duchenne or Becker muscular dystrophy, for carriers (or possible carriers) of Duchenne/Becker, and for their family members.

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 the United States, but participants from any country in the world are welcome to participate. If you live outside the United States, click here to see if your country has a registry. If so, we encourage you to participate in your country’s registry as well as The Duchenne Registry.

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 penalize you or ask you for an explanation. (However, we would ask 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 Duchenne Registry Coordinator (coordinator@duchenneregistry.org) 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.

The Duchenne Registry's Purpose

The purpose of the The Duchenne Registry 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 patient and family information that we collect allows The Duchenne Registry 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. Duchenne Registry 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 Duchenne registry 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 standardized questions designed to measure different symptoms or effects. The Duchenne Registry will also ask you to provide important information from your medical record, such as genetic test results.

After registering and creating a profile, you will be contacted by The Duchenne Registry 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 and Receiving Information

  • Updating your Registry

    The Duchenne Registry 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 The Duchenne Registry continues to grow, new questions will be added to the current Profile surveys. Additionally, The Duchnene Registry will add new surveys and patient-report outcome measures on focused topics such as quality of life, behavior and learning, and motor development 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 The Duchenne Registry account.  

  • Receiving More Information

    Once you are registered, you will have access to educational materials and tools on The Duchenne Registry site. You will also be able to use the Duchenne Registry to get information about how other Registry participants experience the impact of Duchenne/Becker, which may be useful in understanding your own experience. The Duchenne Registry will contact you, usually at least 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 Duchenne Registry 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 authorized 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 Invitae, a leader in developing registry systems. Invitae complies with important research and privacy regulations for protecting patient data in research.

All of the information you provide to The Duchenne Registry 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 Duchenne Registry team and our technical team at Invitae have access to your identified information.

The data collected and compiled by this Registry belongs to The Duchenne Registry community. Parent Project Muscular Dystrophy (PPMD) is the guardian of the information contained within the Registry. PPMD staff who are not on The Duchenne Registry 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.

The Duchenne Registry 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 "Tell me more about how confidentiality is protected."

Uses of Information in the Registry

The goal of this Registry is to make the information you provide searchable and widely usable, while protecting your identity. In response to specific questions about Duchenne or Becker muscular dystrophy, The Duchenne Registry performs searches for relevant information provided by Registry participants. The Duchenne Registry data is only available to Duchenne Registry staff, who perform analysis of the data and report back to the research community. The Duchenne Registry will also report back to you about what questions are being studied and the value of the Registry in answering them.

The Duchenne Registry data is used in three ways: to connect you with research; to help with searches and research using de-identified data and information; to help with searches and research using identified data and information

  • To connect you with research

    The Duchenne Registry works with researchers and community members 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.

  • To help with searches and research using de-identified data

    Most of the time, in order to protect your privacy, The Duchenne Registry research uses de-identified data. This means that personally identifying identification, such as names and addresses, have been removed.  The Duchenne Registry makes de-identified data gathered from the Registry available to The Duchenne Registry 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 carefully reviews all requests for Registry data and determines the validity and importance to the community. If the request for data is approved, The Duchenne Registry provides counts and/or de-identified data sets to the researcher.

    Some de-identified information will also be shared with datasets and research groups focusing on a broader range of diseases. For example, a subset of de-identified information collected from each profile will be shared with global databases with whom The Duchenne Registry collaborates, in order to develop global knowledge that may lead to new research and thus to new or improved treatments. Among these databases are: the TREAT-NMD (TREAT-Neuromuscular Diseases) global (international) database and the NCBI (National Center for Biotechnology Information) at the National Library of Medicine, National Institutes of Health (United States).

  • To help with searches and research using identified data (by permission only)

    The Duchenne Registry will never share identified information (information that includes your name and/or contact information) with any outside researchers or groups without your permission. We may seek your permission to give this information to selected partners. This will be your choice every time and will never happen without your agreement.

For additional information about how The Duchenne Registry data is being used, and for links to published articles using our data, please visit the Publications section on The Duchenne Registry website home page.

Duchenne Registry participation in PCORnet

The Duchenne Registry participates in PCORnet, the Patient Centered Outcomes Research Network established by the Patient Centered Outcomes Research Institute (PCORI), which was created to fund research of importance to many different patient communities. By pooling information and data from The Duchenne Registry and other partners, PCORnet can speed research and reduce costs. Researchers who utilize PCORnet have access to de-identified information only, unless you provide specific consent for sharing your identified information. If there are opportunities to share identified data to answer an important question, The Duchenne Registry will contact you so you can understand the research and make your own choice.

Benefits to Participating

Benefits to participating in The Duchenne Registry include helping to speed research in Duchenne/Becker muscular dystrophy by sharing your data; having access to genetic counselors (The Duchenne Registry Coordinators) and 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 in the DBMD community; and having the opportunity to ask questions relevant to you that we can answer using The Duchenne Registry data.

Risks to Participating

Participating in The Duchenne Registry entails a small risk of unauthorized use of your information and data. If such an unauthorized use occurs, you will be immediately notified.  If there is a breach in the security of Invitae, 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 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. 

Do you have more questions? Go to our Participation FAQ for more details, or contact us at coordinator@duchenneregistry.org

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