Terms & Conditions

1. General Information, Purpose and Acceptance of Terms and Conditions

A. General Information. Use of the International Cholangiocarcinoma Patient Registry (ICPR) and the services associated with the ICPR are governed by the following terms and conditions (“Terms and Conditions”) as well as a privacy policy (“Privacy Policy”), both of which you must read and agree to before using the ICPR and the corresponding services. All pages within the ICPR are wholly owned and operated by The Cholangiocarcinoma Foundation (CCF), a registered 501 (c) 3 non-profit organization.

B. Purpose. The purpose of the ICPR is to provide individuals, families, medical providers, and researchers a database in which to register and/or retrieve relevant information about cholangiocarcinoma. The information provided by the registrant, is maintained in a secure database and identifiable information will never be shared without the registrant’s prior consent, unless otherwise required by law. However, the ICPR will allow registrants to search de-identified (coded and anonymous) information available on the ICPR.

C. Acceptance of Terms and Conditions. By using the ICPR, you represent that you accept, agree to and have read all of the Terms and Conditions and the Privacy Policy, that you 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 Cholangiocarcinoma Foundation. The Cholangiocarcinoma Foundation reserves the right to modify these Terms and Conditions at any time in its sole discretion, and without prior notice. We encourage you to review the Terms and Conditions and Privacy Policy 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 ICPR.

2. Ownership. All of The Cholangiocarcinoma Foundation content available on the ICPR, including and without limitation, any information, software, photographs, images, video, audio, graphics, or text, and all patent, copyright, trademark, trade dress, domain name, trade secret, and other proprietary rights therein are the sole property of The Cholangiocarcinoma Foundation. You agree to abide by all applicable intellectual property laws and any additional restrictions set forth on the ICPR in relation to the content.

3. Use of the ICPR

A. Legal Capacity. You may use the ICPR or register to be included in or access and search the registry database, if you (i) are at least eighteen (18) years old; or (ii) possess legal parental or guardian consent; and (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, you may not use the ICPR.

B. True, accurate and complete information. . If you register to use the ICPR, you agree to provide true, accurate and complete registration information.

C. Lawful Use. You agree to use the ICPR for lawful purposes only. You shall comply with all federal, state, and local laws applicable and shall not use the ICPR 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 Cholangiocarcinoma 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 ICPR: (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 Cholangiocarcinoma Foundation’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, libellous, unlawfully threatening or harassing; and (6) shall not create liability for The Cholangiocarcinoma Foundation or cause the forfeiture 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 ICPR, including but not limited to unsolicited e-mail, also called spam.

D. Patient Registry for Allowable Activities (“Allowable Activities”). The ICPR is for registered users only. Specifically, individuals, families, or providers can use the ICPR to register and update a registration and, once registered, to search de-identified (coded and anonymous) information. Organizations, companies, and/or businesses may register as providers. The ICPR cannot be used in connection with any other endeavour outside of the Allowable Activities, including, but not limited to blogging. Specifically, you shall not disclose, post, publish, display, or transmit any of the ICPR content, without the written consent of The Cholangiocarcinoma Foundation. You also shall, at all times, maintain all de-identified (coded and anonymous) information received from the ICPR 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 the ICPR 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 ICPR Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it of any unauthorized use of your password or account or any other breach of security. The Cholangiocarcinoma Foundation will not be liable for any loss or damage arising from your failure to comply with this section. Certain portions of the ICPR and information contained on the ICPR may be accessible only to registered users or to affiliates, service providers or other business partners of The Cholangiocarcinoma Foundation, or may otherwise be password restricted. You agree not to (i) gain or attempt to gain unauthorized access to such portions of the ICPR or to information contained in such sections of the ICPR; (ii) obtain or attempt to obtain confidential, proprietary and/or personal information stored on the ICPR; (iii) distribute passwords to unregistered or unauthorized users; or (iv) make any unauthorized use of the ICPR or information accessible on the ICPR.

B. User Submitted Content. You acknowledge and agree that, upon creation of a profile on the IPCR and your individual 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 Cholangiocarcinoma Foundation, as de-identifiable (coded and anonymous) data only, for research, statistical, study, and evaluation purposes. Notwithstanding the foregoing, however, The Cholangiocarcinoma Foundation makes no representation or guarantee that your profile or provider information will be reviewed.

The Cholangiocarcinoma Foundation is not in any way associated with or responsible for content posted on or transmitted to the ICPR by users, including, but not limited to, User Submissions. The Cholangiocarcinoma Foundation has the right, but not the obligation, to monitor and verify content posted on or transmitted to the ICPR 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 the ICPR; and to terminate any user’s access to the ICPR at any time, without prior notice.

You acknowledge and agree that The Cholangiocarcinoma Foundation is not required to edit or review any information or content posted, submitted, or otherwise transmitted. However, The Cholangiocarcinoma Foundation reserves the right, in its sole discretion, to verify and correct any errors, inaccuracies, or omissions in any portion of the ICPR or content posted thereon or submitted or otherwise transmitted thereto, and all such content may be subject to The Cholangiocarcinoma Foundation approval. The Cholangiocarcinoma Foundation reserves the right, at any time, for any reason, to reject, suspend, cancel or remove content, and neither The Cholangiocarcinoma Foundation, 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 ICPR. You agree not to transmit or otherwise make available on the ICPR any personal information of any individual or any material protected by copyright, trademark, publicity, privacy or other proprietary right without the prior 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 Cholangiocarcinoma 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 ICPR.

By submitting material to any area of the ICPR, you expressly grant to The Cholangiocarcinoma Foundation 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 Terms and Conditions and 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 The Cholangiocarcinoma Foundation with respect thereto, and agree to indemnify and hold The Cholangiocarcinoma Foundation harmless to the fullest extent allowed by law regarding all matters related to your use of the ICPR, whether as a registered provider in submitting User Submissions and/or creating a profile, or as a representative of an institution using the ICPR for informational and educational purposes. You may report abuses of the ICPR to the ICPR Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it with sufficient detail identifying the abusive conduct or content, so that The Cholangiocarcinoma Foundation 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 ICPR and all content contained therein. You are solely responsible for any equipment necessary to access and use the ICPR.

C. Cooperation. You agree to cooperate fully with The Cholangiocarcinoma Foundation to investigate any suspected or actual activity that is in breach of these Terms and Conditions and Privacy Policy.

D. Research Studies, Clinical Trials, and Other Developments. It is your responsibility to stay informed regarding clinical trials, research and other developments of interest. Although The Cholangiocarcinoma Foundation will attempt to distribute relevant information regarding research studies and clinical trials based on the information provided in your profile, The Cholangiocarcinoma Foundation assumes no responsibility for informing you regarding all such studies and trials, and makes no guarantee as to the completeness or accuracy of such information. The Cholangiocarcinoma Foundation also assumes no responsibility for connecting you with the provider of a research study or clinical trial, but will make every effort to inform you of upcoming research studies or clinical trials. Furthermore, The Cholangiocarcinoma Foundation assumes no responsibility for ensuring your qualification or participation in any such study or trial. It is your responsibility to contact the relevant investigators and pursue participation in a study or trial.

The value and relevance of the information provided by The Cholangiocarcinoma Foundation 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,

E. Risk of Using the ICPR and the Internet. You assume total responsibility and risk for your use of the ICPR and the internet. You acknowledge and agree that any uploads or transmission you make to, from or through the ICPR 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 Websites. The ICPR may contain links to other websites that are not under the control of The Cholangiocarcinoma Foundation. The Cholangiocarcinoma Foundation is not responsible for the content 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 The Cholangiocarcinoma Foundation. 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 in ICPR. In the course of using the ICPR, 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 ICPR). You understand that by posting materials on ICPR or otherwise providing materials to us, you are agreeing to allow us to aggregate your de-identified (coded and anonymous) data for use by the community and other third parties. You understand that all information publicly posted or privately transmitted through the ICPR is the sole responsibility of the person from which such content originated and that The Cholangiocarcinoma Foundation will not be liable for any errors or omissions in any content. You understand that The Cholangiocarcinoma Foundation cannot guarantee the identity of any other users with whom you may interact in the course of using the ICPR or services. 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 you are responsible for your own medical care, treatment, and oversight. All of the “content” provided on the ICPR, 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 ICPR. 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 ICPR.

7. Disclaimer of Warranties. THE ICPR AND THE CONTENT MADE AVAILABLE ON THE ICPR ARE PROVIDED ON AN "AS IS" AND "AS AVAILABLE" BASIS. THE CHOLANGIOCARCINOMA FOUNDATION DOES NOT MAKE ANY EXPRESSED 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 ICPR, THE CONTENT, ANY ADVICE OR SERVICES PROVIDED THROUGH THE ICPR 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 CHOLANGIOCARCINOMA FOUNDATION DOES NOT WARRANT THAT THE ICPR WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE ICPR WILL BE CORRECTED, THAT ANY INFORMATION CONTAINED ON OR TRANSMITTED THROUGH THE ICPR 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. UNDER NO CIRCUMSTANCES SHALL THE CHOLANGIOCARCINOMA FOUNDATION OR ANY OF ITS PARTNERS, CONTRIBUTORS, AGENTS, EMPLOYEES, OR ANY OTHER PARTY INVOLVED IN CREATING, PRODUCING, OR DISTRIBUTING THE ICPR OR PROVIDING CONTENT, ADVICE, PRODUCTS OR SERVICES THROUGH THE ICPR 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 ICPR; (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 ICPR; (V) ANY LOSS, MISUSE, OR UNAUTHORIZED ACCESS TO OR ALTERATION OF INFORMATION OR MATERIALS TRANSMITTED TO OR CONTAINED ON THE ICPR; (VI) STATEMENTS, ADVICE, WARRANTIES, GUARANTEES OR CONDUCT OF THE CHOLANGIOCARCINOMA FOUNDATION OR ANY THIRD PARTY ON THE ICPR, OR (VII) ANY OTHER MATTER RELATING TO THE USE OF THE ICPR. YOU HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH SHALL APPLY TO ALL CONTENT, ADVICE, MERCHANDISE, AND SERVICES AVAILABLE THROUGH THE ICPR. 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 CHOLANGIOCARCINOMA FOUNDATION AND ITS RESPECTIVE AFFILIATES, PARTNERS, CONTRIBUTORS, OFFICERS, DIRECTORS, EMPLOYEES, ASSIGNS, ATTORNEYS AND AGENTS.

9. Indemnification. You agree to indemnify and otherwise hold harmless The Cholangiocarcinoma Foundation, 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 ICPR, including, but not limited to, your access to, submission of, or distribution of, information to or from the ICPR; (ii) any misuse, unauthorized access to, disclosure, alteration, or destruction of the ICPR, information contained in the ICPR, and/or your communications with or through the ICPR, or (iii) any other matter relating to the ICPR. You understand and agree that The Cholangiocarcinoma Foundation may disclose information provided if such disclosure is required by applicable law.

10. Copyright and Copyright Agent. The ICPR and the compilation (meaning selection, composition, and arrangement) of all of the content on the ICPR is the exclusive property of The Cholangiocarcinoma Foundation and protected by U.S. and international copyright law. The Cholangiocarcinoma Foundation 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). You agree to not take any action with respect to content of the ICPR that would violate the intellectual property rights of The Cholangiocarcinoma Foundation or the individual rights of other users. Content contained on the ICPR 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 Cholangiocarcinoma Foundation or, in the case of user-submitted content, any other appropriate party or parties. It is your sole responsibility to secure all necessary rights and permissions before downloading, reproducing, modifying, distributing, or otherwise using user-submitted content.

The Cholangiocarcinoma Foundation respects the intellectual property of others and asks that you 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 Cholangiocarcinoma Foundation 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.

You may contact The Cholangiocarcinoma Foundation for notice of claims of infringement as follows:
By mail: 5526 West 13400, South #510, Salt Lake City, UT 84096. U.S.A
By email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

11. Trademarks. The name The Cholangiocarcinoma Foundation, The Cholangiocarcinoma Foundation logo, the International Cholangiocarcinoma Patient Registry (ICPR) and other Cholangiocarcinoma Foundation logos and names are trademarks of The Cholangiocarcinoma Foundation and the International Cholangiocarcinoma Patient Registry. You agree not to display or use these trademarks in any manner without The Cholangiocarcinoma Foundation’s prior, written permission.

12. International Users. The Cholangiocarcinoma Foundation makes no claims that information on the ICPR is appropriate or may be downloaded outside of the United States. Access to the ICPR may not be legal in certain countries or for certain persons. If you access the ICPR 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. Personal information that is submitted will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our Privacy Policy.

If you access the ICPR from outside of the United States, you acknowledge and agree that The Cholangiocarcinoma Foundation 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 ICPR.

13. General Practices Regarding Use and Storage. You agree that The Cholangiocarcinoma Foundation 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 ICPR. You acknowledge that The Cholangiocarcinoma Foundation reserves the right to log off accounts that are inactive for an extended period of time, as defined by the ICPR Coordinator or ICPR Advisory Board. You further acknowledge that The Cholangiocarcinoma Foundation reserves the right to modify these general practices and limits.

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

15. Termination. You agree that The Cholangiocarcinoma Foundation may, with or without cause, immediately terminate your account and access to the ICPR or the services without prior notice. Without limiting the foregoing, the following will lead to a termination of use of the ICPR by The Cholangiocarcinoma Foundation or the services provided by the ICPR (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 Cholangiocarcinoma Foundation’s sole discretion and that The Cholangiocarcinoma Foundation shall not be liable to you or any third-party for any termination of your account or access to the ICPR or the services of the ICPR.

16. Communications from The Cholangiocarcinoma Foundation. From time to time, The Cholangiocarcinoma Foundation or other related entities will notify you of updates and other valuable information about The Cholangiocarcinoma Foundation, the ICPR and related clinical and research information (see our Privacy Policy to learn more about communications). By using the ICPR, or registering or subscribing for services provided on or through the ICPR, you consent to being contacted by The Cholangiocarcinoma Foundation and related entities, and to receiving such updates and information. You acknowledge and agree to accept email transmissions from The Cholangiocarcinoma Foundation in order to use the ICPR or the services.

17. Fees. Signing up for the ICPR account is free for all patients and/or family participants.

18. Governing Law. Any disputes arising out of the use of the ICPR or the services or these Terms and Conditions will be governed by the law of the Salt Lake City, 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 City, Utah.

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

20. Contacting the ICPR Coordinator. If you have any medical, research, treatment or patient-related questions, contact your primary care provider and/or medical and/or surgical oncologist treating your cholangiocarcinoma. If you have questions about the ICPR, or to report violations of these Terms and Conditions, please email the ICPR Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

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.