1.    General; Purpose and Acceptance of Terms and Conditions

a.    General. The SADS International Registry of Channelopathies (the “Registry”) is governed by the following terms and conditions herein (the “Terms and Conditions”) and a privacy policy ( the “Privacy Policy”), both of which you must read before using  the Registry.  All pages within the Registry are owned and operated by SADS Foundation, a national non-profit organization based in Utah (The SADS Foundation, together with any and all of its members, directors, and affiliated entities, are referred to collectively herein as “SADS”).

b.    Purpose. The purpose of the Registry is to serve as a repository of patient data to be used for both external and internal research. The Registry also provides a tool for families to track the family screening process, to assist families obtain screening, and to obtain more detailed information about affected individuals experience with the disease. This in turn will to improve SADS ability to notify participants about research studies they can participate in.  The information provided by the registrant, during registration, is maintained in secured database and will never be shared without the registrant’s express consent.  However, the SADS will allow registrants and researchers to search de-identified information available on the Registry.

c.    Acceptance of Terms and Conditions. By using the Registry, you represent, 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 SADS.  SADS reserves the right to modify these Terms and Conditions at any time in its sole discretion, and without prior notice, by posting amended terms on the Registry. We encourage you to review the Registry 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 may not use the Registry.

2.    Ownership

a.    All SADS-generated content available at 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 SADS or used by SADS 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 Registry if you are at least Eighteen (18) years old, older, or possess legal parental or guardian consent, that you 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 that you 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 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 (a) that is unlawful, infringing, tortious, fraudulent, abusive, harassing or otherwise harmful to SADS or any other party or property; (b) that violates another party’s intellectual property, privacy, or other rights; or (c) 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: (a) shall not be false, fraudulent, inaccurate or misleading; (b) shall not be obscene or indecent; (c) 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; (d) shall not infringe on any of SADS or other third party's copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy; (e) shall not be defamatory, libelous, unlawfully threatening or harassing; and (f) shall not create liability for SADS 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 SADS.  Users also shall, at all times, maintain all de-identified information received from the Registry in the strict confidence.

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 Registry, 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 SADS Foundation Coordinator of any unauthorized use of your password or account or any other breach of security.  SADS 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 on the Registry may be accessible only to registered users or to affiliates, service providers or other business partners of The Sponsor, 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, (3) 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 on 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 SADS, as de-identifiable data only, for research, statistical, study, and evaluation purposes.  Notwithstanding the foregoing, however, SADS makes no representation or guaranty that your profile or provider information will be reviewed.

SADS 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.  SADS 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 SADS is not required to edit or review any information or content posted, submitted, or otherwise transmitted by users.  However, SADS 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 SADS approval.  SADS reserves the right, at any time, for any reason, to reject, suspend, cancel or remove content, and neither SADS, nor its employees, consultants or 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 SADS 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.

By submitting material to any area of the Registry, you expressly grant to SADS the royalty-free, perpetual, irrevocable, non-exclusive right and license to use, reproduce, modify, adapt, publish, translate, and distribute such material (in whole or in part) worldwide, in accordance with the Privacy Policy.

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 SADS with respect thereto, and agree to indemnify and hold SADS 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 a institution using the Registry for informational and educational purposes.  Users may report abuses of the Registry to SADS Registry Coordinator with sufficient detail identifying the abusive conduct or content, so that SADS 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 SADS 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.  Although SADS will attempt to distribute relevant information regarding research studies and clinical trials to users based on the information provided in the user’s profile, SADS 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.  SADS 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, SADS assumes no responsibility for ensuring the 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 SADS 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 Registrys.  The Registry may contain links to other Websites that are not under the control of SADS.  SADS is 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 by SADS.  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 Website

a.    In the course of using the Registry, 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).  You understand that by posting materials on the Registry or otherwise providing materials to us, you are agreeing to allow us to aggregate your anonymized data for use by the community. You understand that all information publicly posted or privately transmitted through the Registry is the sole responsibility of the person from which such content originated and that SADS will not be liable for any errors or omissions in any content. You understand that SADS cannot guarantee the identity of any other users with whom you may interact in the course of using the Registry. Additionally, we cannot guarantee the authenticity of any data that users may provide about themselves.

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 Sponsor 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 GENERALLY. SOME STATES MAY NOT PERMIT THE DISCLAIMER OF IMPLIED WARRANTIES, SO THE FOREGOING DISCLAIMER MAY NOT APPLY TO YOU.  The Sponsor DOES NOT WARRANT THAT THE REGISTRY WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE REGISTRY WILL BE CORRECTED, THAT ANY INFORMATION CONTAINED ON OR TRANSMITTED THROUGH THE REGISTRY IS COMPLETE OR ACCURATE, 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 Sponsor OR ANY OF ITS 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: (I) THE USE OF OR INABILITY TO USE THE REGISTRY; (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 REGISTRY; (V) ANY LOSS, MISUSE, OR UNAUTHORIZED ACCESS TO OR ALTERATION OF INFORMATION OR MATERIALS TRANSMITTED TO OR CONTAINED ON THE REGISTRY; (VI) STATEMENTS, ADVICE, WARRANTIES, GUARANTEES OR CONDUCT OF The Sponsor OR ANY THIRD PARTY ON THE REGISTRY, OR (VII) 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 Sponsor AND ITS RESPECTIVE AFFILIATES, PARTNERS, CONTRIBUTORS, OFFICERS, DIRECTORS, EMPLOYEES, ASSIGNS, ATTORNEYS AND AGENTS.

9.    Indemnification

a.    You agree to indemnify and otherwise hold harmless SADS, its 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 SADS may disclose information if required to do so by law or in the good faith belief that such disclosure is reasonably necessary to comply with legal process, enforce these Terms and Conditions, or protect the rights, property, or safety of SADS, users of the Registry, and the public.

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 SADS and protected by U.S. and international copyright law. SADS 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 SADS 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 SADS 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.

SADS 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 SADS' designated Copyright Agent 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 SADS Registry Coordinator or notice of claims of infringement on this Website as follows:

Sudden Arrhythmia Death Syndromes (SADS) Foundation
508 E. South Temple
Salt Lake City, UT 84102
1-800-786-7723
This e-mail address is being protected from spambots. You need JavaScript enabled to view it

11.    Trademarks

a.    The SADS Foundation, the SADS Foundation logo, and other SADS' logos and names are trademarks of the SADS Foundation.  You agree not to display or use these trademarks in any manner without SADS' 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

a.    SADS makes no claims that information on the Registry is appropriate or may be downloaded outside of the United States. Access to the Registry may not be legal in certain countries or for certain persons. If you access the Registry 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 this Registry 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 SADS 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 as detailed in our Privacy Policy. If you do not consent to such transfer, you may not use this Registry.

13.    General Practices Regarding Use And Storage.

a.    You agree that SADS has 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. You acknowledge that SADS reserves the right to log off accounts that are inactive for an extended period of time. You further acknowledge that SADS reserves the right to modify these general practices and limits from time to time.

14.    Privacy

a.    You agree that you have read and understand the terms of the Privacy Policy. This policy governs the collection, use and sharing of personal and non-personal information from you when using the Registry.

15.     Termination

a.    You agree that SADS may, with or without cause, immediately terminate your account and access to the Registry without prior notice. Without limiting the foregoing, the following will lead to a termination by SADS of a user's use of the the Registry (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 SAD's sole discretion and that SADS shall not be liable to you or any third-party for any termination of your account or access to the Registry.

16.    Communications from SADS

a.    From time to time, SADS or other related entities will notify users of updates and other valuable information about SADS, the Registry and related clinical and research information (see our Privacy Policy to learn more about communications).  By using the Registry, or registering or subscribing for services provided on or through the Registry, users consent to being contacted by The Sponsor and related entities, and to receiving such updates and information.  Users acknowledges and agrees that users must always accept email transmissions from SADS, in order, to continue to use the the Registry.

17.    Fees

a.    Signing up for an account is free.  SADS reserves the right to charge for the Registry or any portion thereof, modify the pricing of, add to, or discontinue the Registry or any portion thereof without prior notice.

18.    Governing Law

a.    Any disputes arising out of the use of the Registry or these Terms and Conditions will be governed by the law of the State of Utah, 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 Salt Lake County, Utah.

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 SADS Pedigree Coordinator