Parent Project Muscular Dystrophy is committed to protecting the privacy of our participating members in The Duchenne Registry™. To better protect your privacy, we provide this notice explaining our information practices. To make this notice easy to locate, we make it available as a link on our home page (www.duchenneregsitry.org). We define personal information to include: name(s), date of birth, email address, mailing address, survey responses, registry information and non-public information included in your correspondence with us.
When you contact The Duchenne Registry Coordinator at Coordinator@DuchenneRegistry.org your email address and other information included in your email may be forwarded to the appropriate person(s) within The Duchenne Registry for a response. A copy of your correspondence may be retained by The Duchenne Registry and also by the responding individual.
The Duchenne Registry has established and maintains a mailing database. The mailing list includes families of affected individuals, physicians, scientists, and other contributors. The Duchenne Registry will never release our mailing list or the names of our member families to any outside organization or third party unless required to do so by law. However, if an outside organization sends us information for distribution to The Duchenne Registry participants, we may mail it to you after proper approval.
Information determined to be confidential can only be released by written or verbal permission by the subject of the information or organization that owns the information. Verbal permission may be valid in limited circumstances. Any general release must be in writing. Information may be released if required by law, such as in response to an investigation or subpoena. The Duchenne Registry web site provides links to other sites that may be of interest. Parent Project Muscular Dystrophy is not responsible for the privacy practices or content of other such websites.
Parent Project Muscular Dystrophy is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the privacy and security of all personal information in our possession. Access to personal information will be limited to The Duchenne Registry personnel and Parent Project Muscular Dystrophy subcontractors who have a need to use such information in the course of their work on The Duchenne Registry. In all instances, this work will be directly overseen by Parent Project Muscular Dystrophy. All individuals will be instructed of their obligations under Parent Project Muscular Dystrophy’s confidentiality and security requirements set in place for The Duchenne Registry.
You must read this Privacy Policy (the “Privacy Policy”) and the Application Software (the “App”) (defined below) terms of use (the “Terms and Conditions”) prior to using any portion of The Duchenne Registry Application, available for download from one or more digital distribution platforms. By using the App, you agree to all the terms of the Privacy Policy and Terms and Conditions. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the App.
This Website is owned and operated by Parent Project Muscular Dystrophy; the App is owned by Parent Project Muscular Dystrophy and hosted by THREAD Research, a third party software-as-service company. Parent Project Muscular Dystrophy respects your privacy and has written the Privacy Policy so that you are aware of the information The Duchenne Registry collects from you, how that information is protected, and how it is used. If you have any questions or comments regarding the Privacy Policy, or you feel that The Duchenne Registry is not abiding by its posted Privacy Policy, please contact us at: coordinator@DuchenneRegistry.org
- General
- This Privacy Policy outlines the type of information The Duchenne Registry collects from the users of the App and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the Website. We encourage you to review the Privacy Policy periodically for any updates or changes.
- Collection, Use and Disclosure of Information
- Collection of Information. All of the information you provide to The Duchenne Registry will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law.
- Use and Disclosure of Information. The goal of this registry is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identifiers such as name, address, social security number has been removed) gathered from this profile will be made available to researchers in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. De-identified information may be disclosed to third parties working in the Duchenne research field and otherwise used in accordance with legal requirements.
Parent Project Muscular Dystrophy may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the App or to the services provided on the App, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users. These Outside Contractors may have limited access to information collected on the App, including protected health information and personally identifiable information. In the course of providing such products or services, Outside Contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.
- Withdrawal of Information
- At any time, you have the right to withdraw your information from The Duchenne Registry database. You may exercise this right by contacting the The Duchenne Registry coordinator at coordinator@DuchenneRegistry.org and your account will be deactivated and the identifying information in your profile will be removed.
- Protection of User Information
- All users are required to review and abide by The Duchenne Registry Terms and Conditions and the Privacy Policy. Parent Project Muscular Dystrophy, and its contractors, will use commercially reasonable methods to protect the security of information and data submitted on the App. We, and our contractors, employ best practices from our networking to our secure servers to protect data from intrusion. Users should keep in mind, however, that no electronic transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the App, you should take special care to safeguard them.
- Ownership of Information
- All of the information you provide to The Duchenne Registry in connection with the Website and App is owned by you. You agree to grant Parent Project Muscular Dystrophy the right to maintain, use and disclose your De-Identified data as set forth in this Privacy Policy and The Duchenne Registry Terms and Conditions. Your information may contribute to the development of inventions or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products or other such discoveries and you will receive no economic benefit.
- Cookies
- When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser. A cookie is a piece of data stored on the user’s hard drive containing information about the user. Cookies may be used by The Duchenne Registry to enable it to track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, he or she may still use the Site.
- Log Files; Web Beacons
- The Duchenne Registry may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Website, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to personally identifiable information. The Duchenne Registry may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally-identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.
- Links
- Both the Duchenne Registry webpage and app may contain links to other websites. This Privacy Policy applies solely to information collected on or submitted to the webpage or app. Parent Project Muscular Dystrophy is not responsible for the privacy practices of other sites linked to or third party advertisements. Parent Project Muscular Dystrophy encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Duchenne Registry webpage or app.
- Communications From The Duchenne Registry
- From time to time, Parent Project Muscular Dystrophy or other related entities will notify users of updates and other valuable information about The Duchenne Registry, and related clinical and research information. By using the Duchenne Registry App, or registering or subscribing for services provided on or through the Website, users consent to being contacted by Parent Project Muscular Dystrophy and The Duchenne Registry and related entities, and to receiving such updates and information. Parent Project Muscular Dystrophy and The Duchenne Registry encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, Parent Project Muscular Dystrophy and The Duchenne Registry cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from Parent Project Muscular Dystrophy and The Duchenne Registry, such emails will clearly be from The Duchenne Registry and will include instructions on how to unsubscribe from future emails.
- Required Disclosures
- You understand and agree that Parent Project Muscular Dystrophy and The Duchenne Registry may disclose information provided by you if in its good faith belief such disclosure is required by applicable law.
- Contact Us; Member Accounts
- If you elect to contact Parent Project Muscular Dystrophy or The Duchenne Registry through contact information provided on the Website, in the App,, or register for an account, you may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing your inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration). Parent Project Muscular Dystrophy and The Duchenne Registry stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.
- Children Under The Age Of Thirteen (13)
- The Duchenne Registry is unable to prevent children under the age of thirteen (13) from visiting the Website or downloading the App; however, no part of our Website or App is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Website or App at any time or in any manner. In order to comply with the Children’s Online Privacy Protection Act, The Duchenne Registry will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Website including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, Parent Project Muscular Dystrophy or The Duchenne Registry personnel learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, Parent Project Muscular Dystrophy and The Duchenne Registry will take the appropriate steps to delete such information.
- Change of Control
- In the event that Parent Project Muscular Dystrophy is involved in a bankruptcy, merger, acquisition, reorganization or sale of assets, your information may be sold or transferred as part of that transaction. The promises in this Privacy Policy will apply to your information as transferred to the new entity.
- U.S.-EU Safe Harbor Framework
- Parent Project Muscular Dystrophy assures that our technology partners who assist in the operation of The Duchenne Registry comply with the U.S.-EU Safe Harbor Framework and the U.S.-Swiss Safe Harbor Framework as set forth by the U.S. Department of Commerce regarding the collection, use, and retention of personal information from European Union member countries and Switzerland. The Duchenne Registry technology partners have certified that they adhere to the Safe Harbor Privacy Principles of notice, choice, onward transfer, security, data integrity, access, and enforcement. To learn more about the Safe Harbor program, and to view certification, please visit http://www.export.gov/safeharbor/
As part of the participation in the Safe Harbor program, we agree to resolve disputes you have with us in connection with our policies and practices through TRUSTe. If you would like to contact TRUSTe, visit https://feedback-form.truste.com/watchdog/request.
- Parent Project Muscular Dystrophy assures that our technology partners who assist in the operation of The Duchenne Registry comply with the U.S.-EU Safe Harbor Framework and the U.S.-Swiss Safe Harbor Framework as set forth by the U.S. Department of Commerce regarding the collection, use, and retention of personal information from European Union member countries and Switzerland. The Duchenne Registry technology partners have certified that they adhere to the Safe Harbor Privacy Principles of notice, choice, onward transfer, security, data integrity, access, and enforcement. To learn more about the Safe Harbor program, and to view certification, please visit http://www.export.gov/safeharbor/
- Notification of Changes
- You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. Parent Project Muscular Dystrophy reserves the right to change the Privacy Policy at any time, without prior notice.