1. General; Purpose and Acceptance of Terms and Conditions
b. Purpose. The purpose of the Registry is to allow individuals, families and medical and research providers to register certain information in the Registry database. The information provided by the registrant during registration is maintained in a secured database and will never be shared without the registrant’s express consent, unless otherwise required by law. However, the Registry will allow registrants to search de-identified information available in the Registry database.
a. All Registry-generated content available on the Registry, including without limitation, any information, software, photographs, images, video, audio, graphics, or text on the Registry (“Content”), and all patent, copyright, trademark, trade dress, domain name, trade secret, and other proprietary rights therein are the sole property of the Myotonic Dystrophy Family Registry or used by the Myotonic Dystrophy Family Registry 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 Registry in relation to the Content.
3. Use of the Registry
a. Legal Capacity. You may use the Registry or register to be included in or access and search the 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 Registry.
b. True, accurate and complete information. If you register to use the Registry, you agree to provide true, accurate and complete registration information.
c. Lawful Use. You agree to use the Registry for lawful purposes only. You shall comply with all federal, state, and local laws applicable to the use of this Registry and shall not use the Registry to engage in any prohibited conduct. Prohibited conduct, broadly stated, is any conduct (i) that is unlawful, infringing, tortuous, fraudulent, abusive, harassing or otherwise harmful to Myotonic Dystrophy Family Registry, the Myotonic Dystrophy Foundation 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 Registry: (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 any of the Myotonic Dystrophy Family Registry’s or other third party's 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 create liability for the Myotonic Dystrophy Family Registry or cause us 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 Registry, including but not limited to unsolicited e-mail, also called spam.
d. Registry for Allowable Activities (defined herein) only. The Registry is for the use of registered users only. Specifically, individuals, families, or providers can use the Registry to register and update a registration and, once registered, to search de-identified information (the “Allowable Activities”). Organizations, companies, and/or businesses may register as providers. The Registry cannot be used in connection with any other endeavor outside of the Allowable Activities, including, but not limited to blogging. Specifically, users shall not disclose, post, publish, display, or transmit any of the Registry content, without the written consent of the Myotonic Dystrophy Family Registry. Users also shall, at all times, maintain all de-identified information received from the Registry in the strictest of confidence and shall not attempt to re-identify such information.
e. No Unauthorized Use. You may not attempt to gain unauthorized access to this Registry 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 Myotonic Dystrophy Family Registry Coordinator of any unauthorized use of your password or account or any other breach of security. The Myotonic Dystrophy Family Registry will not be liable for any loss or damage arising from your failure to comply with this section. Certain portions of the Registry and information contained in the Registry may be accessible only to registered users or to affiliates, service providers or other business partners of the Myotonic Dystrophy Family Registry, or may otherwise be password restricted. You agree not to (i) gain or attempt to gain unauthorized access to such portions of the Registry or to information contained in such sections of the Registry; (ii) obtain or attempt to obtain confidential, proprietary and/or personal information stored on the Registry; (iii) distribute passwords to unregistered or unauthorized users; or (iv) make any unauthorized use of the Registry or information accessible on the Registry.
b. User Submitted Content. You acknowledge and agree that, upon creation of a profile in the Registry 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 other registered users or to affiliates, service providers or other business partners of the Myotonic Dystrophy Family Registry, as de-identifiable data only, for research, statistical, study, and evaluation purposes. Notwithstanding the foregoing, however, the Myotonic Dystrophy Family Registry makes no representation or guaranty that your profile or provider information will be reviewed.
The Myotonic Dystrophy Family Registry is not in any way associated with or responsible for content posted on or transmitted to the Registry by users, including, but not limited to, User Submissions. The Myotonic Dystrophy Family Registry has the right, but not the obligation, to monitor and verify content posted on or transmitted to the Registry for any reason, and reserves 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 Registry; and to terminate any User’s access to the Registry at any time, without prior notice.
Each user acknowledges and agrees that the Myotonic Dystrophy Family Registry is not required to edit or review any information or content posted, submitted, or otherwise transmitted by users. However, the Myotonic Dystrophy Family Registry reserves the right, in its sole discretion, to verify and correct any errors, inaccuracies, or omissions in any portion of the Registry or content posted thereon or submitted or otherwise transmitted thereto, and all such content may be subject to the Myotonic Dystrophy Family Registry approval. The Myotonic Dystrophy Family Registry reserves the right, at any time, for any reason, to reject, suspend, cancel or remove content, and neither the Myotonic Dystrophy Family Registry, nor its employees, consultants nor other agents will have any liability for taking such actions. You are responsible for any content you post, publish, display or otherwise transmit to the Registry. You agree not to transmit or otherwise make available on the Registry 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. You shall be solely liable for and shall indemnify and hold the Myotonic Dystrophy Family Registry and its owner, the Myotonic Dystrophy Foundation, 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 to, or transmission of information from, the Registry.
You further understand and acknowledge that you may be exposed to User Submissions that are inaccurate or otherwise objectionable, and you agree to waive and hereby do waive, any legal or equitable rights or remedies you have or may have against the Myotonic Dystrophy Family Registry with respect thereto, and agree to indemnify and hold the Myotonic Dystrophy Family Registry and its owners or successors harmless to the fullest extent allowed by law regarding all matters related to your use of the Registry, whether as a registered provider in submitting User Submissions and/or creating a profile, or as a representative of an institution using the Registry for informational and educational purposes. Users may report abuses of the Registry to the Myotonic Dystrophy Family Registry Coordinator with sufficient detail identifying the abusive conduct or content, so that the Myotonic Dystrophy Family Registry may determine, in its sole discretion, whether to take action with respect to such alleged abuse.
You are solely responsible for and will exercise caution, discretion, common sense and judgment in using and accessing the Registry and all content contained therein. You are solely responsible for any equipment necessary to access and use the Registry.
c. Cooperation. You agree to cooperate fully with the Myotonic Dystrophy Family Registry 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 stay informed regarding clinical trials, research and other developments of interest. Although the Myotonic Dystrophy Family Registry 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 Myotonic Dystrophy Family Registry assumes no responsibility for informing users regarding all such studies and trials, and makes no guaranty as to the completeness or accuracy of such information. The Myotonic Dystrophy Family Registry also assumes 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 Myotonic Dystrophy Family Registry assumes 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 pursue participation in a study or trial.
The value and relevance of the information provided by the Myotonic Dystrophy Family Registry is directly linked to the information provided by users in their respective profiles and registration. It is your responsibility to provide complete and accurate information, and to update your profile information as appropriate, so that you can receive relevant and current information.
e. Risk of Using the Registry and the Internet. You assume total responsibility and risk for your use of the Registry and the Internet. You acknowledge and agree that any uploads or transmission you make to, from or through the Registry may be intercepted and used by an unauthorized third party and that all of the risk associated with these activities is solely yours.
f. Links to Other Registries. The Registry may contain links to other registries that are not under the control of the Myotonic Dystrophy Family Registry. The Myotonic Dystrophy Family Registry is not responsible for the contents of any linked Registry or any link contained in a linked Registry, or any changes or updates to such Registries. The inclusion of any link does not imply endorsement by the Myotonic Dystrophy Family Registry. It is up to you to take precautions to ensure that whatever you select for your use is free of viruses, worms, Trojan horses, and other items of a destructive nature.
5. Information Contained on Registry
6. Disclaimer of Medical Advice
You understand and acknowledge that all users are responsible for their own medical care, treatment, and oversight. All of the Content provided on the Registry, including text, treatments, dosages, outcomes, charts, profiles, graphics, photographs, images, advice, messages, forum postings, are for informational purposes only and are not intended to be a substitute for 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 of the Registry. You understand and acknowledge that you should always seek the advice of your physician or other qualified health provider with any questions or concerns you may have regarding your health. You also understand and acknowledge that you should never disregard or delay seeking medical advice relating to treatment or standard of care because of information featured on or transmitted through the Registry.
7. Disclaimer of Warranties
a. The Registry and the content made available on the Registry are provided on an “as-is” and “as available” basis. The Myotonic Dystrophy Family Registry and its owner, MDF, does 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 Registry, the content, any advice or services provided through the Registry or on the internet in general. Some states may not permit the disclaimer of implied warranties, so the foregoing disclaimer may not apply to you. The Myotonic Dystrophy Family Registry does not warrant that the Registry will be uninterrupted or error-free, or that defects in the Registry will be corrected, that any information continued on or transmitted through the Registry 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 Myotonic Dystrophy Family Registry or any of its owner(s), partners, contributors, agents, employees, or any other party involved in creating, producing, or distributing the Registry or providing content, advice, products or services through the Registry be liable for any direct, indirect, incidental, special or consequential damages for loss of profits, goodwill, use, data or other intangible losses (even if we have been advised of the possibility of such damages) that result from: 1) the use of or inability to use the Registry; (2) any inaccuracies, errors, omissions, or lack of authenticity in the content; (3) use of the content; (4) the cost of procuring substitute merchandise, advice or services resulting from use of the Registry; (5) any loss, misuse, or unauthorized access to or alteration of information or materials transmitted to or contained on the Registry; (6) statements, advice, warranties, guarantees or conduct of the Myotonic Dystrophy Family Registry or any third party on the Registry, or (7) any other matter relating to the use of the Registry. You hereby acknowledge that this paragraph shall apply to all content, advice, merchandise, and services available through the Registry. 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 Myotonic Dystrophy Family Registry and its respective affiliates, partners, contributors, officers, directors, employees, assigns, attorneys and agents.
a. You agree to indemnify and otherwise hold harmless the Myotonic Dystrophy Family Registry, its owner, officers, employees, agents, subsidiaries, affiliates and other partners from any and all liability, including any and all direct, indirect, incidental, special, consequential or exemplary damages, and any and all costs and/or expenses (including reasonable attorneys’ fees) resulting from (i) your use of the Registry, including, but not limited to, your access to, submission of, or distribution of, information to or from the Registry; (ii) any misuse, unauthorized access to, disclosure, alteration, or destruction of the Registry, information contained in the Registry, and/or your communications with or through the Registry, or (iii) any other matter relating to the Registry. You understand and agree that the Myotonic Dystrophy Family Registry may disclose information provided if, in its good faith belief terms, such disclosure is required by applicable law.
10. Copyright and Copyright Agent
a. The Registry and the compilation (meaning selection, composition, and arrangement) of all of the content on the Registry is the exclusive property of the Myotonic Dystrophy Family Registry and protected by U.S. and international copyright law. The Myotonic Dystrophy Family Registry reserves 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 Registry agree to not take any action with respect to content of the Registry that would violate the intellectual property rights of the Myotonic Dystrophy Family Registry or the individual rights of other users. Content contained on the Registry 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 Myotonic Dystrophy Family Registry 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 Myotonic Dystrophy Family Registry respects 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 Myotonic Dystrophy Family Registry 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 Registry are covered by a single notification, a representative list of such works at that Registry; 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; 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 Myotonic Dystrophy Family Registry for notice of claims of infringement on this Registry as follows:
By phone: (602) 435-7496
a. The name the Myotonic Dystrophy Family Registry, the Myotonic Dystrophy Family Registry logo, and the Myotonic Dystrophy Foundation logos and names are trademarks of the Myotonic Dystrophy Family Registry and the Myotonic Dystrophy Foundation respectively. You agree not to display or use these trademarks in any manner without the Myotonic Dystrophy Family Registry’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.
12. International Users
If you are a non-U.S. user, you acknowledge and agree that the Myotonic Dystrophy Family Registry 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 us 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 Registry.
13. General Practices Regarding Use and Storage.
a. You agree that the Myotonic Dystrophy Family Registry or its owners agents or employees 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 Registry. You acknowledge that the Myotonic Dystrophy Family Registry reserves the right to log off accounts that are inactive for an extended period of time. You further acknowledge that the Myotonic Dystrophy Family Registry reserves the right to modify these general practices and limits from time to time.
a. You agree that the Myotonic Dystrophy Family Registry may, with or without cause, immediately terminate your account and access to the Registry or the Services without prior notice. Without limiting the foregoing, the following will lead to a termination by the Myotonic Dystrophy Family Registry of a user's use of the Registry 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 you (self-initiated account deletions), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. You agree that all terminations shall be made in the Myotonic Dystrophy Family Registry’s sole discretion and that the Myotonic Dystrophy Family Registry shall not be liable to you or any third-party for any termination of your account or access to the Registry or the Services.
16. Communications from the Myotonic Dystrophy Family Registry
a. Signing up for an account is free. The Myotonic Dystrophy Family Registry reserves 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
a. Any disputes arising out of the use of the Registry 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 York.
19. Statute of Limitations
a. Any cause of action you may have with respect to use of the Registry must be commenced within one (1) year after the claim or cause of action arises.
20. Contacting the Myotonic Dystrophy Family Registry Coordinator