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Terms & Conditions



1.1 General. Use of the PSC Partners Seeking a Cure Patient Registry website (the "Registry Website") and the services associated with the Registry Website (the "Services") 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 Website and the Services. All pages within the Registry Website are owned and operated by PSC Partners Seeking a Cure (PSC Partners Seeking a Cure together with any and all of its members, directors, and affiliated entities, are referred to collectively herein as "PSC Partners").

1.2 Purpose. The purpose of the Registry Website is to allow individuals, families, and medical and research providers to register certain information on the Registry Website's 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. However, the Registry Website will allow registrants to search de-identified information available on the Registry Website.

1.3 Acceptance of Terms and Conditions. By using the Registry Website, you represent, accept, and agree that you have read all of the Registry Terms and Conditions and the Registry 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 PSC Partners Seeking a Cure. PSC Partners 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 this Registry Website. We encourage you to review the Registry Website Terms and Conditions periodically for any updates or changes. If you do not agree to be bound by the Registry Terms and Conditions and the Privacy Policy, you may not use the Registry Website.


2.1 All PSC Partners-generated content available at the Registry Website, including without limitation any information, software, photographs, images, video, audio, graphics, or text on the Registry Website ("Content"), and all patent, copyright, trademark, domain name, trade secret, and other proprietary rights therein, are the sole property of PSC Partners or used by PSC Partners 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 Website in relation to the Content.


3.1 Legal Capacity. You may use the Registry Website or register to be included in or access and search the patient registry database if you are at least eighteen (18) years old, or possess legal parental or guardian consent, 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 you agree to be bound by these Terms and Conditions. If you are not competent to form legally binding agreements, do not use this Registry Website.

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

3.3 Lawful Use. You agree to use the Registry Website for lawful purposes only. You shall comply with all federal, state, and local laws applicable to the use of this Patient Registry Website and shall not use the Registry Website 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 PSC Partners 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 Website (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 PSC Partners' 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 PSC Partners 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 Website, including but not limited to unsolicited e-mail, also called spam.

3.4 Registry Website for Allowable Activities (defined herein) only. The Registry Website is for the use of registered users only. Specifically, individuals, families, or providers can use the Registry Website 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 Website 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 Website content, without the written consent of PSC Partners. Users also shall, at all times, maintain all de-identified information received from the Website in the strictest of confidence.

3.5 No Unauthorized Use. You may not attempt 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.


4.1 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 PSC Partners Registry Coordinator of any unauthorized use of your password or account or any other breach of security. PSC Partners will not be liable for any loss or damage arising from your failure to comply. Certain portions of the Website and information contained on the Registry Website may be accessible only to registered users or to affiliates, service providers or other business partners of PSC Partners, or may otherwise be password restricted. You agree not to (a) gain or attempt to gain unauthorized access to such portions of the Registry Website or to information contained in such sections of the Registry Website, (b) obtain or attempt to obtain confidential, proprietary and/or personal information stored on the Registry Website, (c) distribute passwords to unregistered or unauthorized users, or (d) make any unauthorized use of the Registry Website or information accessible on the Registry Website. PSC Partners reserves the right to deny or revoke access to the Services, in whole or in part, if PSC Partners reasonably believes that you are in breach of these Terms and Conditions or are otherwise using or accessing the Services inconsistent with the Terms and Conditions.

4.2 User-submitted Content. You acknowledge and agree that, upon creation of a profile on the Registry 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 other registered users or to affiliates, service providers or other business partners of PSC Partners, as de-identifiable data only, for research, statistical, study, and evaluation purposes. Notwithstanding the foregoing, however, PSC Partners makes no representation or guarantee that your profile or provider information will be reviewed.

PSC Partners is not in any way associated with or responsible for content posted on or transmitted to the Registry Website by users, including, but not limited to, User Submissions. PSC Partners has the right, but not the obligation, to monitor and verify content posted on or transmitted to the Registry Website 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 Website, and to terminate any User's access to the Registry Website at any time, without prior notice.

Each user acknowledges and agrees that PSC Partners is not required to edit or review any information or content posted, submitted, or otherwise transmitted by users. However, PSC Partners reserves the right, in its sole discretion, to verify and correct any errors, inaccuracies, or omissions in any portion of the Registry Website or content posted thereon or submitted or otherwise transmitted thereto, and all such content may be subject to PSC Partners' approval. PSC Partners reserves the right, at any time, for any reason, to reject, suspend, cancel, or remove content, and neither PSC Partners, 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 Website. You agree not to transmit or otherwise make available on the Registry 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. You shall be solely liable for and shall indemnify and hold PSC Partners 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 Website.

By submitting material to any area of the Registry Website, you expressly grant to PSC Partners 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 Registry 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 PSC Partners with respect thereto, and agree to indemnify and hold PSC Partners harmless to the fullest extent allowed by law regarding all matters related to your use of the Registry Website, whether as a registered provider in submitting User Submissions and/or creating a profile, or as a representative of an institution using the Registry Website for informational and educational purposes. Users may report abuses of the Registry Website to the PSC Partners Registry Coordinator with sufficient detail identifying the abusive conduct or content, so that PSC Partners 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 Website and all content contained therein. You are solely responsible for any equipment necessary to access and use the Registry Website.

4.3 Cooperation. You agree to cooperate fully with PSC Partners to investigate any suspected or actual activity that is in breach of these Terms and Conditions.

4.4 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 PSC Partners will attempt to distribute relevant information regarding research studies and clinical trials to users based on the information provided in the user's profile, PSC Partners assumes no responsibility for informing users regarding all such studies and trials and makes no guarantee as to the completeness or accuracy of such information. PSC Partners 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, PSC Partners 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 PSC Partners 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.

4.5 Risk of Using the Registry Website and the Internet. You assume total responsibility and risk for your use of the Registry Website and the Internet. You acknowledge and agree that any uploads or transmission you make to, from, or through the Registry Website may be intercepted and used by an unauthorized third party and that all of the risk associated with these activities is solely yours.

4.6 Links to Other Websites. The Registry Website may contain links to other Websites that are not under the control of PSC Partners. PSC Partners 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 PSC Partners. 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.


5.1 In the course of using the Registry 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 Registry Website). You understand that by posting materials on the Registry Website 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 Website is the sole responsibility of the person from which such content originated, and that PSC Partners will not be liable for any errors or omissions in any content. You understand that PSC Partners cannot guarantee the identity of any other users with whom you may interact in the course of using the Registry Website or Services. Additionally, we cannot guarantee the authenticity of any data that users may provide about themselves.


6. 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 Website, including text, treatments, dosages, outcomes, charts, profiles, graphics, photographs, images, advice, messages, and 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 Website. 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 Website.


7.1 The Registry Website and the content made available on the registry website are provided on an "as is" and "as available" basis. PSC Partners 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 website, the content, or 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 to you. PSC Partners does not warrant that the registry website will be uninterrupted or error-free or that defects in the registry website will be corrected, that any information contained on or transmitted through the registry website 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.


8.1 Under no circumstances shall PSC Partners or any of its partners, contributors, agents, employees, or any other party involved in creating, producing, or distributing the registry website or providing content, advice, products, or services through the registry website 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 or inability to use the registry 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 registry website; (v) any loss, misuse, or unauthorized access to or alteration of information or materials transmitted to or contained on the registry website; (vi) statements, advice, warranties, guarantees, or conduct of PSC Partners or any third party on the registry website, or (vii) any other matter relating to the use of the registry website. You hereby acknowledge that this paragraph shall apply to all content, advice, merchandise, and services available through the registry 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 PSC Partners and its respective affiliates, partners, contributors, officers, directors, employees, assigns, attorneys, and agents.



9.1 You agree to indemnify and otherwise hold harmless PSC Partners, 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 Website, including, but not limited to, your access to, submission of, or distribution of, information to or from the Registry Website; (ii) any misuse, unauthorized access, disclosure, alteration, or destruction of the Registry Website, information contained in the Registry Website, and/or your communications with or through the Registry Website, or (iii) any other matter relating to the Registry Website. You understand and agree that PSC Partners may disclose information provided if in its good faith belief such disclosure is required by applicable law.


10.1 The Registry Website and the compilation (meaning selection, composition, and arrangement) of all of the content on the Registry Website is the exclusive property of PSC Partners and protected by US and international copyright law. PSC Partners 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 Website agree to not take any action with respect to content of the Registry Website that would violate the intellectual property rights of PSC Partners or the individual rights of other users. Content contained on the Registry 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 PSC Partners 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.

PSC Partners 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 PSC Partners' 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 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;

  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 PSC Partners' designated Copyright Agent for notice of claims of infringement on this Website as follows:

By mail: PSC Partners Seeking a Cure
6900 E. Belleview Ave., Suite 202
Greenwood Village, CO 80111
By phone (303) 771-5227
By email


11.1 The name PSC Partners Seeking a Cure, PSC Partners, PSC Partners Patient Registry, the PSC Partners Seeking a Cure logo, and other PSC Partners Seeking a Cure logos and names are trademarks of PSC Partners Seeking a Cure. You agree not to display or use these trademarks in any manner without PSC Partners Seeking a Cure'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.


12.1 PSC Partners Seeking a Cure makes 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 this Website will be collected, processed, stored, disclosed, and disposed of in accordance with applicable US law and our Privacy Policy.

Our Websites are controlled and operated by Invitae. Invitae makes no representation that materials in our Websites are appropriate or available for use in all locations worldwide. You are solely responsible for compliance with local laws, if and to the extent local laws are applicable. Access to our Websites from jurisdictions where the contents of our Websites are illegal or penalized is prohibited.

If you are a non-US user, you acknowledge and agree that Invitae may collect and use your de-identified 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. US 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 US 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 our Websites.


13.1 You agree that PSC Partners Seeking a Cure 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 PSC Partners Seeking a Cure reserves the right to delete accounts that are inactive for an extended period of time. You further acknowledge that PSC Partners Seeking a Cure reserves the right to modify these general practices and limits from time to time.


14.1 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 Website. By agreeing to these Terms and Conditions, you acknowledge that you have had prior access and agree to the terms of the Privacy Policy. You further acknowledge and agree that the terms of the Privacy Policy may be updated by PSC Partners.


a. You agree that PSC Partners Seeking a Cure may, with or without cause, immediately terminate your account and access to the Website or the Services without prior notice. Without limiting the foregoing, the following will lead to a termination by PSC Partners Seeking a Cure 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 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 PSC Partners Seeking a Cure's sole discretion and that PSC Partners Seeking a Cure shall not be liable to you or any third-party for any termination of your account or access to the Website or the Services.


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

17. FEES

17.1 Signing up for an account is free.


18.1 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 Colorado, 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 Colorado.


19.1 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.


For any questions or comments, or to report violations of these Terms and Conditions, let us know, or contact us at:

PSC Partners Seeking a Cure
Registry Coordinator
6900 E. Belleview Ave., Suite 202
Greenwood Village, CO 80111

(303) 771-5227

Date effective: June 1, 2020

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