Understanding Your Participation

Introduction

DuchenneConnect 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. DuchenneConnect is a program of Parent Project Muscular Dystrophy (PPMD).  PPMD is the sole guardian of DuchenneConnect and its material.

DuchenneConnect’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 DuchenneConnect 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 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 DuchenneConnect.

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 DuchenneConnect 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's Purpose

The purpose of DuchenneConnect 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 DuchenneConnect 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 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 standardized questions designed to measure different symptoms or effects. DuchenneConnect 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 DuchenneConnect 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
    • DuchenneConnect 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 continues to grow, new questions will be added to the current Profile surveys. Additionally, DuchenneConnect 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 DuchenneConnect account.  
  • Receiving More Information
    • Once you are registered, you will have access to educational materials and tools on the DuchenneConnect site. You will also be able to use DuchenneConnect to get information about how other Registry participants experience the impact of Duchenne/Becker, which may be useful in understanding your own experience. DuchenneConnect 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 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 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 PatientCrossroads, a leader in developing registry systems. PatientCrossroads complies with important research and privacy regulations for protecting patient data in research.

All of the information you provide to DuchenneConnect 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 team and our technical team at PatientCrossroads have access to your identified information.

The data collected and compiled by this Registry belongs to the DuchenneConnect community. Parent Project Muscular Dystrophy (PPMD) is the guardian of the information contained within the Registry. PPMD staff who are not on the DuchenneConnect 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 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, DuchenneConnect performs searches for relevant information provided by Registry participants. The DuchenneConnect data is only available to DuchenneConnect staff, who perform analysis of the data and report back to the research community. DuchenneConnect will also report back to you about what questions are being studied and the value of the Registry in answering them.

DuchenneConnect 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
    • DuchenneConnect 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, DuchenneConnect research uses de-identified data. This means that personally identifying identification, such as names and addresses, have been removed.  DuchenneConnect makes de-identified data gathered from the Registry available to the DuchenneConnect 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, DuchenneConnect 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 DuchenneConnect 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)
    • DuchenneConnect 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 DuchenneConnect data is being used, and for links to published articles using our data, please visit the How Your Data is Being Used section on the DuchenneConnect website home page.

DuchenneConnect participation in PCORnet

DuchenneConnect 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 DuchenneConnect 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, DuchenneConnect will contact you so you can understand the research and make your own choice.

Benefits to Participating

Benefits to participating in DuchenneConnect include helping to speed research in Duchenne/Becker muscular dystrophy by sharing your data; having access to genetic counselors (the DuchenneConnect 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 DuchenneConnect data.

Risks to Participating

Participating in DuchenneConnect 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 PatientCrossroads, 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 This email address is being protected from spambots. You need JavaScript enabled to view it.

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