Understanding your participation in DuchenneConnect

 
The purpose of the DuchenneConnect profile is to assist clinicians, pharmaceutical companies, and researchers in developing new clinical trials for Duchenne/Becker muscular dystrophy. Collecting the information you create when you develop a profile will enable DuchenneConnect and researchers to learn more about the scope and impact of this genetic disorder on individuals and families.  Having this information is crucial in the process of developing new, improved treatments for Duchenne and Becker muscular dystrophy.   DuchenneConnect will also provide you with a means of accessing information regarding clinical trials for which you or your child may be eligible.

How will creating a DuchenneConnect profile affect me or my child?  

This registry has been created specifically for individuals with Duchenne/Becker muscular dystrophy and/or carriers (or possible carriers) of Duchenne/Becker. Parents and guardians of persons with Duchenne/Becker muscular dystrophy may register for them.  After registering and creating a profile, you will be contacted periodically with information about new research studies/clinical trials as they become available, as well as upcoming activities and resources. You will also be able to use DuchenneConnect to communicate with other members of the Duchenne/Becker community, in order to share information and get a better sense of how you or your child fit within the larger Duchenne/Becker Community.

Will I need to provide DuchenneConnect with additional information?  

It is important to have the most current information in the database to assist in developing research studies/clinical trials. Therefore, from time to time, we will ask you to update your/your child’s profile. Periodically updating this information will also keep you closely attuned to the status of your/your child’s health in relation to the larger Duchenne/Becker community. 

How is my privacy or my child's privacy protected?  

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 expressed approval. Should new knowledge become available that may affect you and your family; that is, as clinical trials or research studies are developed for possible participation, DuchenneConnect, based on the information you placed in your profile, will then put you in contact with the investigators responsible for the proposed research study/clinical trial, so that you can decide if you want to learn more.   The investigator(s) responsible for the research study/clinical trial will determine if you or your child is eligible to participate and is responsible to answer any questions about the research study/clinical trial.  DuchenneConnect is deeply committed to issues of privacy and identity, and will continue to take every available measure to ensure the security of your personal information.

What happens to the information I put in my/ my childs profile, and who has access to it?  

The goal of this registry is to make the information you provide searchable, while protecting your identity. De-identified data (information from which all personal identification has been removed) gathered from the profiles will be made available to the DuchenneConnect community of registered patients, family, friends, caregivers, and medical researchers, in the hope that this de-identified information will support breakthroughs and clinical trials that could lead to better treatments and care management.

The de-identified data collected and compiled by this registry belongs to the DuchenneConnect community. PPMD (Parent Project Muscular Dystrophy) is the guardian of the information contained within the registry. DuchenneConnect will perform the searches for specific questions within the DuchenneConnect registry and provide reports back to you and the medical research community. Some of this de-identified information will also be shared with databases focusing on the broader range of neuromuscular diseases.

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 of muscular dystrophy that may lead to new research studies/clinical trials and improved clinical treatment. 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).

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

It is alright if you participate in more than one registry.   The goal of DuchenneConnect is to coordinate activities with other registries where possible.  DuchenneConnect will put in place checks and safeguards to help identify duplication of registrants and to coordinate with other registries in placing information in global databases.  You and your child's personal identification that you have provided to DuchenneConnect will always remain protected.

At any time, you reserve the right to withdraw your information from the DuchenneConnect registry. Simply contact the DuchenneConnect Coordinator, and your profile will be removed.

As a parent/guardian, how deeply should I involve my child in the registration process?  

We believe that it is important for all the people participating in this registry to be as informed as possible. Therefore, if you are a parent or legal guardian of a child under the age of 18, but feel that the child is old enough to understand the idea of the registry, we recommend that you talk with your child and obtain his cooperation 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 to fill out the registration and answer the questions; it’s perfectly alright to provide that help.

If you have any questions regarding the  DuchenneConnect registration process, a DuchenneConnect Coordinator is available to discuss them with you. Please email the DuchenneConnect coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .