Terms & Conditions

1. General; Purpose and Acceptance of Terms and Conditions

a. General. The Duchenne Registry is owned and operated by the Parent Project Muscular Dystrophy ("PPMD") and administered by Invitae, Inc ("Invitae"). Collectively, PPMD and Invitae shall be referred to hereinafter as the "Duchenne Registry Managers". The Duchenne Registry provides clinical resources and research support for registered users ("Users").Use of the Duchenne Registry website (the "Website") and the services associated the Website (the "Services") is governed by the following terms and conditions (the "Terms and Conditions") and privacy policy (the "Privacy Policy"), both of which you must agree to before using the Website and the Services.

b. Purpose. The purpose of the Website is to allow individuals, families and medical and research providers to provide certain information for inclusion within the Duchenne Registry database. The information provided is maintained in a secure database and will never be shared without your express consent, unless otherwise required by law. However, the Website will allow registered users to search de-identified Duchenne Registry information and by participating you expressly giving consent for registered users to use the Duchenne Registry information you provide so long as such information is provided to them in a de-identified format (i.e. you will not be identified to such Duchenne Registry users).

c. Acceptance of Terms and Conditions. By using the Website, you represent that you accept and agree that you have read all of the Terms and Conditions and the Privacy Policy, understand them, and that you agree to and have the legal capacity to be bound by them. These Terms and Conditions constitute a legal agreement between you and the Duchenne Registry Managers.  The Duchenne Registry Managers reserve the right to modify these Terms and Conditions at any time in their sole discretion, and without prior notice, by posting amended terms on this Website. We encourage you to review the Terms and Conditions periodically for any updates or changes. If you do not agree to be bound by the Terms and Conditions and the Privacy Policy, you should not provide any information to the Duchenne Registry and you may not use the Website.

2. Ownership

a. All  content available on the Website, including without limitation, any information, software, photographs, images, video, audio, graphics, or text on the Website ("Content"), and all patent, copyright, trademark, trade dress, domain name, trade secret, and other proprietary rights therein are the sole property of PPMD or are displayed with the permission of the owner of such content. You agree to abide by all applicable intellectual property laws and any additional restrictions set forth on the Website in relation to the Content.

3. Use of the Website

a. Legal Capacity. You may use the Website or register to be included in the Duchenne Registry database, if you (i) are at least eighteen (18) years old; (ii) possess legal parental or guardian consent; (iii) are fully able and competent to enter into the terms and conditions set forth in these Terms and Conditions and are otherwise capable of forming legally binding agreements under applicable law; and (iv) agree to be bound by these Terms and Conditions. If you are not competent to form legally binding agreements, do not use this Website.

b. True, accurate and complete information. If you register to use the Website, you agree to provide true, accurate and complete information.

c. Lawful Use. You agree to use the Website for lawful purposes only. You shall comply with all federal, state, and local laws applicable to the use of this Website and shall not use the Website to engage in any prohibited conduct. Prohibited conduct, broadly stated, is any conduct (i) that is unlawful, infringing, tortious, fraudulent, abusive, harassing or otherwise harmful to the Duchenne Registry Managers or any other party or property; (ii) that violates another party’s intellectual property, privacy, or other rights; or (iii) that otherwise interferes with the operation, use or enjoyment of any service, system, or other property. Without limiting the generality of the foregoing, any information provided by you in connection with use of the Website: (1) shall not be false, fraudulent, inaccurate or misleading; (2) shall not be obscene or indecent; (3) shall not contain any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information; (4) shall not infringe on the Duchenne Registry Managers or other third party copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy; (5) shall not be defamatory, libelous, unlawfully threatening or harassing; and (6) shall not be intended to create liability for the Duchenne Registry Managers or cause the users of this Website to lose the services of our Internet service providers or other suppliers. You may not take any action that imposes an unreasonable burden upon the infrastructure used to support the Website, including but not limited to sending unsolicited e-mail, also called spam, through use of the Website or its contents.

d. Website for Allowable Activities. The Website is for the use of registered users only and for the purpose of furthering scientific research and assisting patients with Duchenne Muscular Dystrophy and their families; s individuals, families, and other registrants can use the Website to register and update a registration and, once registered, to search de-identified information (all of the foregoing, the "Allowable Activities"). Organizations, companies, and/or businesses also may register. The Website cannot be used in connection with any other endeavor outside of the Allowable Activities, including, but not limited to blogging. Users of the Website shall not disclose, post, publish, display, or transmit any of the Website content, without the express written consent of the Duchenne Registry Managers. Users also shall, at all times, maintain all de-identified information received from the Website only for the Allowable Activities and shall not attempt to re-identify such information.

e. No Unauthorized Use. You may not attempt and shall not allow others through your registration to gain unauthorized access to this Website or any services, other accounts, computer systems or networks connected to any server or to any of the Services, through hacking, password mining or any other means.

4. User Conduct and Responsibility

a. Security. You are solely responsible for the security of your password and your account, and are fully responsible for all activities that occur under your password or account with or without your knowledge. If you knowingly provide your login and password information to another person, your account privileges may be suspended temporarily or terminated. You agree to immediately notify the Duchenne Registry Managers of any unauthorized use of your password or account or any other breach of security. The Duchenne Registry Managers will not be liable for any loss or damage arising from your failure to comply with this section. Certain portions of the Website and information contained on the Website may be accessible only to certain registered users or may otherwise be password restricted. You agree not to (i) gain or attempt to gain unauthorized access to such portions of the Website or to information contained in such sections of the Website; (ii) obtain or attempt to obtain confidential, proprietary and/or personal information stored on the Website; (iii) distribute passwords to unregistered or unauthorized users; or (iv) otherwise make any unauthorized use of the Website or information accessible on the Website.

b. User Submitted Content. You acknowledge and agree that, upon creation of a profile on the Website and registration or registration as a provider, your submitted content (each submission individually, and all submissions, collectively, referred to herein as the "User Submission") may be available for viewing by others authorized to use the Website, AS DE-IDENTIFIABLE DATA ONLY, for the Allowable Activities. Notwithstanding the foregoing, however, the Duchenne Registry Managers make no representation or guaranty that your profile or provider information will be reviewed.

The Duchenne Registry Managers are not in any way associated with or responsible for content posted on or transmitted to the Website, including, but not limited to, User Submissions. The Duchenne Registry Managers have the right, but not the obligation, to monitor and verify content posted on or transmitted to the Website for any reason, and reserve the right to remove anything that is, in its sole discretion, unacceptable, inappropriate, or not in compliance with these Terms and Conditions; to disclose data to law enforcement agencies or authorities who may investigate reports of misuse or abuse of this Website; and to terminate any User’s access to the Website at any time, without prior notice.

Each User acknowledges and agrees that is the Duchenne Registry Managers are not required to edit or review any information or content posted, submitted, or otherwise transmitted by Users. However, the Duchenne Registry Managers reserve the right, in their sole discretion, to verify and correct any errors, inaccuracies, or omissions in any portion of the Website or content posted thereon or submitted or otherwise transmitted thereto, and all such content may be subject to the Duchenne Registry Managers approval. The Duchenne Registry Managers reserve the right, at any time, for any reason, to reject, suspend, cancel or remove content, and shall not have any liability for taking such actions.

Users are responsible for any content they post, publish, display or otherwise transmit to the Website. Users agree not to transmit or otherwise make available on the Website any personal information of any individual or any material protected by copyright, trademark, publicity, privacy or other proprietary right without the express permission of such individual or the owner of such rights, respectively. The burden of determining that transmission of the information is permissible, or that the material is not protected by such rights, is on you, the User. Users shall be solely liable for and shall indemnify and hold the Duchenne Registry Managers harmless for any damages resulting from any infringement of copyrights, trademarks, proprietary rights, violation of privacy or publicity rights, or any other harm resulting from your submissions of information from the Website.

By submitting material to any area of the Website, Users expressly grant to PPMD a royalty-free, perpetual, irrevocable, non-exclusive right and license to use, reproduce, modify, adapt, publish, translate, and distribute your De-Identified information (in whole or in part) worldwide, in accordance with the Privacy Policy.

Users acknowledge that they may be exposed to User Submissions that are inaccurate or otherwise objectionable, and agree to waive and hereby do waive, any legal or equitable rights or remedies any Users have or may have against the Duchenne Registry Managers with respect thereto, and agree to indemnify and hold the Duchenne Registry Managers harmless to the fullest extent allowed by law regarding all matters related to a Users’ use of the Website, whether as a registered provider in submitting User Submissions and/or creating a profile, or as a representative of an institution using the Website for informational and educational purposes. Users may report abuses of the Website to the Website Coordinator with sufficient detail identifying the abusive conduct or content, so that the Duchenne Registry Managers may determine, in their sole discretion, whether to take action with respect to such alleged abuse.

Users are solely responsible for and will exercise caution, discretion, common sense and judgment in using and accessing the Website and all content contained therein. Users are solely responsible for any equipment necessary to access and use the Website.

c. Cooperation. Users agree to cooperate fully with the Duchenne Registry Managers to investigate any suspected or actual activity that is in breach of these Terms and Conditions.

d. Research Studies, Clinical Trials, and Other Developments. It is the responsibility of all Users to evaluate and otherwise stay informed regarding clinical trials, research and other developments of interest. Although the Duchenne Registry Managers will attempt to distribute relevant information regarding research studies and clinical trials to Users based on the information provided in the User’s profile, the Duchenne Registry Managers assume no responsibility for informing Users regarding all such studies and trials, and make no guaranty as to the completeness or accuracy of such information. The Duchenne Registry Managers also assume no responsibility for connecting any User with the provider of a research study or clinical trial, but will make every effort to inform Users of upcoming research studies or clinical trials. Furthermore, the Duchenne Registry Managers assume no responsibility for ensuring the qualification of a User or participation of any User in any such study or trial. It is the responsibility of each User to contact the relevant investigators and, it he or she wishes, pursue participation in a study or trial.

The value and relevance of the information provided through the Website is a function of the information provided by Users in their respective profiles and registration. It is a User’s responsibility to provide complete and accurate information, and to update the User profile information as appropriate, so that the Website is current and accurate.

e. Risk of Using the Website and the Internet. Users assume complete responsibility and risk for their use of the Website and the Internet. Each User acknowledges and agrees that any uploads or transmission made to, from or through the Website could be intercepted and used by an unauthorized third party and that all of the risk associated with these activities is solely the Users’.

f. Links to Other Websites. The Website may contain links to other Websites that are not under the control of the Duchenne Registry Managers.  The Duchenne Registry Managers are not responsible for the contents of any linked website or any link contained in a linked Website, or any changes or updates to such websites. The inclusion of any link does not imply endorsement thereof. It is up to each User to take precautions to ensure that whatever the Users elects for its use is free of viruses, worms, Trojan horses, and other items of a destructive nature.

5. Information Contained on Website

a. In the course of using the Website or Services, Users may provide information about themselves, which may be visible to certain other Users (see the Privacy Policy to learn more about information collected on the Website). Each User understands and agrees that by posting materials on the Website or otherwise providing materials to us, the User is agreeing to allow the Duchenne Registry Managers to aggregate the User’s anonymized data for use by others. Each User understands and agrees that all information publicly posted or privately transmitted through the Website is the sole responsibility of the person from whom such content originated and that the Duchenne Registry Managers will not be liable for any errors or omissions in any content. Each User understands and agrees that the Duchenne Registry Managers cannot guarantee the identity of any other Users with whom you may interact in the course of using the Website or Services. Additionally, the Duchenne Registry Managers cannot guarantee the authenticity of any data that Users may provide about themselves.Each User understands and agrees that the Duchenne Registry Managers may disclose information provided if in its good faith belief such disclosure is required by applicable law.

6. Disclaimer of Medical Advice

Each User acknowledges and agrees that all Users are responsible for their own medical care, treatment, and oversight. All of the Content provided on the Website, including text, treatments, dosages, outcomes, charts, profiles, graphics, photographs, images, advice, messages, forum postings, are for informational purposes only and are not intended  as independent professional medical judgment, advice, diagnosis, or treatment. The Content is not intended to establish a standard of care to be followed by a User. Each User understands and agrees that the User should always seek the advice of his or her physician or other qualified health provider with any questions or concerns the User may have regarding his or her health. Each User also acknowledges and agrees that theor she should never disregard or delay seeking medical advice relating to treatment or standard of care because of information featured on or transmitted through the Website.

7. Disclaimer of Warranties

a. THE WEBSITE AND THE CONTENT MADE AVAILABLE ON THE WEBSITE ARE PROVIDED ON AN "AS IS" AND "AS AVAILABLE" BASIS. THE DUCHENNE REGISTRY MANAGERS DO NOT MAKE ANY EXPRESS OR IMPLIED WARRANTIES, REPRESENTATIONS OR ENDORSEMENTS WHATSOEVER (INCLUDING, BUT NOT LIMITED TO, WARRANTIES OF TITLE OR NON-INFRINGEMENT, OR THE IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE) WITH REGARD TO THE WEBSITE, THE CONTENT, ANY ADVICE OR SERVICES PROVIDED THROUGH THE WEBSITE OR ON THE INTERNET GENERALLY. SOME STATES MAY NOT PERMIT THE DISCLAIMER OF IMPLIED WARRANTIES, SO THE FOREGOING DISCLAIMER MAY NOT APPLY. .  THE DUCHENNE REGISTRY MANAGERS DO NOT REPRESENT OR WARRANT THAT THE WEBSITE WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE WEBSITE WILL BE CORRECTED, THAT ANY INFORMATION CONTAINED ON OR TRANSMITTED THROUGH THE WEBSITE IS COMPLETE, ACCURATE OR CURRENT, THAT USER OR OTHER INFORMATION WILL BE COMPLETELY SECURE FROM UNAUTHORIZED ACCESS OR DISCLOSURE, OR THAT ANY INFORMATION IS FREE OF VIRUSES OR OTHER ROGUE PROGRAMMING.

8. Limitation of Liability

a. UNDER NO CIRCUMSTANCES SHALL THE DUCHENNE REGISTRY MANAGERS OR ANY OF THEIR PARTNERS, CONTRIBUTORS, AGENTS, EMPLOYEES, OR ANY OTHER PARTY INVOLVED IN CREATING, PRODUCING, OR DISTRIBUTING THE WEBSITE OR PROVIDING CONTENT, ADVICE, PRODUCTS OR SERVICES THROUGH THE WEBSITE BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, PUNITIVE, COMPENSATORY OR CONSEQUENTIAL DAMAGES, OR FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF THEYHAVE BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES) THAT RESULT FROM: (I) THE USE OF OR INABILITY TO USE THE WEBSITE; (II) ANY INACCURACIES, ERRORS, OMISSIONS, OR LACK OF AUTHENTICITY IN THE CONTENT; (III) USE OF THE CONTENT; (IV) THE COST OF PROCURING SUBSTITUTE MERCHANDISE, ADVICE AND SERVICES RESULTING FROM USE OF THE WEBSITE; (V) ANY LOSS, MISUSE, OR UNAUTHORIZED ACCESS TO OR ALTERATION OF INFORMATION OR MATERIALS TRANSMITTED TO OR CONTAINED ON THE WEBSITE; (VI) STATEMENTS, ADVICE, WARRANTIES, GUARANTEES OR CONDUCT OFTHE DUCHENNE REGISTRY MANAGERS OR ANY THIRD PARTY ON THE WEBSITE, OR (VII) ANY OTHER MATTER RELATING TO THE WEBSITE. USERS HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH SHALL APPLY TO ALL CONTENT, ADVICE, MERCHANDISE, AND SERVICES AVAILABLE THROUGH THE WEBSITE. BECAUSE SOME STATES MAY NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, IN SUCH STATES LIABILITY IS LIMITED TO THE LEAST AMOUNT PERMITTED BY LAW. THE LIMITATIONS OF LIABILITY PROVIDED IN THIS AGREEMENT INURE TO THE BENEFIT OF THE DUCHENNE REGISTRY MANAGERS AND THEIRRESPECTIVE AFFILIATES, PARTNERS, CONTRIBUTORS, OFFICERS, DIRECTORS, EMPLOYEES, ASSIGNS, ATTORNEYS AND AGENTS.

9.  Copyright and Copyright Agent

a. The Website and the compilation (meaning selection, composition, and arrangement) of all of the content on the Website is the exclusive property of PPMD and protected by U.S. and international copyright law. The Duchenne Registry Managers reserve the right to remove any content, from any source, at any time, for any reason (including, but not limited to, claims or allegations made by third parties relating to such content). Users of the Website agree to not take any action with respect to content of the Website that would violate the intellectual property rights of the Duchenne Registry Managers or the individual rights of other Users. Content contained on the Website may not be modified, copied, distributed, framed, republished, downloaded, displayed, or sold in any form or by any means, in whole or in part, without the prior written consent of the Duchenne Registry Managers or, in the case of user-submitted content, any other appropriate party or parties. It is the sole responsibility of the User to secure all necessary rights and permissions before downloading, reproducing, modifying, distributing, or otherwise using user-submitted content.

The Duchenne Registry Managers respect the intellectual property of others and asks that Users do the same. If a User or any other party feels that its work has been copied in a way that constitutes copyright infringement, that person should provide the Duchenne Registry Managers with the following information:

  1. A physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed;
  2. Identification of the copyrighted work claimed to have been infringed, or, if multiple copyrighted works at a single online Website are covered by a single notification, a representative list of such works at that Website;
  3. Identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled, and information reasonably sufficient to permit the service provider to locate the material;
  4. Information reasonably sufficient to permit the service provider to contact the complaining party, such as an address, telephone number, and, if available, an electronic mail address at which the complaining party may be contacted;
  5. A statement that the complaining party has a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; and,
  6. A statement that the information in the notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.

Users may contact the Website Coordinator for notice of claims of infringement on this Website as follows:

By email:  This email address is being protected from spambots. You need JavaScript enabled to view it.

10. Trademarks

a. The name Invitae and The Duchenne Registry and their logos and names are trademarks of, respectively, Invitae and PPMD. You agree not to display or use these trademarks in any manner without PPMD’s prior, written permission. The section titles of these Terms and Conditions are displayed for convenience only and have no legal effect. If any provision of these Terms and Conditions are to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.

11. International Users

a. The Duchenne Registry Managers make no claims that information on the Website is appropriate or may be downloaded outside of the United States. Access to the Website may not be legal in certain countries or for certain persons. If you access the Website from outside of the United States, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction regarding online conduct and acceptable content. User personal information ("Information") that is submitted to the Website will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our Privacy Policy.

If you are a non-U.S. User, you acknowledge and agree that the Duchenne Registry Managers may collect and use your Information and disclose it to other entities outside your resident jurisdiction. In addition, such Information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. By providing the Duchenne Registry with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction to the U.S. or other jurisdictions with different, and in some cases, lower levels of protection for your Information. If you do not consent to such transfer, you may not use the Website.

12. General Practices Regarding Use and Storage.

a. Each User agrees that the Duchenne Registry Managers have no responsibility or liability for the deletion or failure to store any messages and other communications or other Content maintained or transmitted by the Website. Each User acknowledges and consents to the Duchenne Registry Managers right to delete accounts. Each User further acknowledges and consent to that the Duchenne Registry Manager’s right to modify these general practices and limits from time to time.

14. Privacy

Each User agrees that he or she has read and understands the terms of the Privacy Policy. This policy governs the collection, use and sharing of personal and non-personal information from Users when using the Website.

15. Termination

a. Each User agrees that the Duchenne Registry Managers may, with or without cause, immediately terminate his or her account and access to the Website or the Services without prior notice. Without limiting the foregoing, the following will lead to a termination by the Duchenne Registry Managers of a User's use of the Website or the Services (a) breaches or violations of these Terms and Conditions or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by a User (self-initiated account deletions), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. Each User agree that all terminations shall be made in the Duchenne Registry Manager’s sole discretion and that the Duchenne Registry Managers shall not be liable to any terminated User or any third-party for any such termination or access to the Website or the Services.

16. Communications from the Duchenne Registry Managers

a. From time to time, either of the Duchenne Registry Managers or other related entities will notify Users of updates and other valuable information about the Duchenne Registry and related clinical and research information (see Privacy Policy to learn more about communications). By using the Website, or registering or subscribing for Services provided on or through the Website, Users consent to being contacted by the Duchenne Registry Managers and related entities, and to receiving such updates and information. Users acknowledge and agree that Users must always accept email transmissions from the Duchenne Registry Managers, in order, to continue to use the Website.

17. Fees

Signing up for an account is free and will always be free to patients. The Duchenne Registry Managers, however, reserve the right to charge for the Services or any portion thereof, modify the pricing of, add to, or discontinue the Services or any portion thereof without prior notice.

18. Governing Law

Any disputes arising out of the use of the Website or the Services or these Terms and Conditions will be governed by the law of the State of California, regardless of conflict of law principles. Sole and exclusive jurisdiction and venue over any dispute arising out of or relating to these Terms and Conditions shall lie in the appropriate federal or state court in New Jersey.

19. Statute of Limitations

a. Any cause of action you may have with respect to use of the Website must be commenced within one (1) year after the claim or cause of action arises.

20. Contacting the Website Coordinator

If you have any medical, research, treatment or patient referral questions, please contact the Website Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it..

If you have questions about the Website, The Duchenne Registry, the Services, or to report violations of these Terms and Conditions, please email the Duchenne Registry Coordinator at:  This email address is being protected from spambots. You need JavaScript enabled to view it..