Privacy policy

The International Cholangiocarcinoma Patient Registry (ICPR) is committed to protecting the privacy of our patients and their families. To better protect your privacy, we provide this notice explaining our information sharing practices. We define personal information to include an individual(s): name(s), email address(es), mailing address, phone number(s), survey responses, registry information, and non-public information included in any of your correspondence with us.

When you contact the ICPR at This e-mail address is being protected from spambots. You need JavaScript enabled to view it , your email address and other information included in your email may be forwarded to the appropriate person(s) within the ICPR and/or Advisory Board for a response. A copy of your correspondence may be retained at The Cholangiocarcinoma Foundation home office and also by the responding individual.

The ICPR has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, physicians, scientists, contributors, and others interested in the research and treatment of cholangiocarcinoma and related cancers. The ICPR will never release our mailing list to any outside organization or third party unless required to do so by law or with your prior written consent.

Information determined to be confidential can only be released by your prior written consent. Verbal permission may be valid in very limited circumstances. Information may be released if required by law, such as in response to an investigation or subpoena. 

The ICPR is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the privacy and security of all personal information in our database. Access to personal information will be limited to the ICPR Coordinator and/or Advisory Board members and other authorized individuals who have shown a true and proper need to use such information in the course of their work on approved projects. In all instances, distribution of de-identified (coded and anonymous) data will be authorized by the ICPR Coordinator and/or Advisory Board. All individuals requesting information must agree to abide by the confidentiality requirements of The Cholangiocarcinoma Foundation in addition to their individual organization’s policies in regards to privacy and confidentiality.

1. General

This Privacy Policy outlines the type of information the ICPR collects and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice. We encourage you to review the Privacy Policy periodically for any updates or changes.

2. Collection, Use and Disclosure of Information

A. Collection of Information. All of the information you provide to the ICPR will be maintained in a secure database, and any information that could identify you will not be shared without your prior written consent, unless otherwise required by law.

B. Use and Disclosure of Information. The goal of the ICPR is to make the information you provided searchable, while concurrently protecting your identity. De-identified (coded and anonymous) data gathered from the ICPR may be made available to approved organizations, collaborative databases and research applicants, in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management for patients with cholangiocarcinoma and related cancers. The ICPR will perform the searches for specific questions within the registry and provide de-identified (coded and anonymous) reports back to you or the requesting party. De-identified (coded and anonymous) information may be disclosed to third parties and otherwise used in accordance with legal requirements.

C. The ICPR may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the ICPR including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services, and developing applications for the ICPR. These Outside Contractors may have limited access to information collected on the ICPR, including protected health information and personally identifiable information. In the course of providing such products or services, Outside Contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.

3. Withdrawal of Information

At any time, you have the right to withdraw your information from the ICPR. You may exercise this right by contacting the ICPR Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

4. Protection of User Information

The ICPR will use commercially accepted methods to protect the security of information and data. The Cholangiocarcinoma Foundation employs best practices from our networking to our secure servers to protect data from intrusion. You should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the ICPR, we encourage you to take special care to safeguard them.

5. Ownership of Information

All of the information you provide to the ICPR is owned by The Cholangiocarcinoma Foundation. Your information may contribute to the development of inventions or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products or other such discoveries and you will receive no economic benefit.

6.  Cookies

When you visit the ICPR, we may send one or more “cookies” to your computer that will uniquely identify your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Cookies may be used by the ICPR to enable it to track and target the interests of users to enhance their experience on the ICPR. Usage of a cookie is in no way linked to any personally identifiable information. You will still be able to use the ICPR even if you reject the cookie(s). 

7. Log Files and Web Beacons

The ICPR may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyse trends, administer the ICPR, and gather broad statistical information for aggregate use. IP addresses are not linked to personally identifiable information. The ICPR may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.

8. Website Links

The ICPR may contain links to other websites that are not under the control of The Cholangiocarcinoma Foundation. The ICPR is not responsible for the privacy practices or content of other such websites. This Privacy Policy applies solely to information collected on or submitted to the ICPR.

9. Communications from the ICPR

 From time to time, the ICPR or other related entities will notify you of updates and other valuable information about the ICPR and related clinical and research information. By using the ICPR, or registering or subscribing for services provided on or through the ICPR, you consent to being contacted by the ICPR and related entities, and to receiving such updates and information. The ICPR encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the ICPR cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from the ICPR, such emails will clearly marked from the ICPR and will include instructions on how to unsubscribe from future emails.

10. Required Disclosures

You understand and agree that the ICPR may disclose information provided by you if such disclosure is required by applicable law.

11. “Contact Us” and Member Accounts

You may be asked for the following information: name, password, email address, email subject, and a message containing your inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration). The ICPR stores this data in order to reply to the inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.

12. Children Under The Age Of Thirteen (13)

The Cholangiocarcinoma Foundation is unable to prevent children under the age of thirteen (13) from visiting the ICPR; however, no part of the ICPR is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the ICPR at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, the ICPR will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the ICPR including, but not limited to, your name and email address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, the ICPR learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, the ICPR will take the appropriate steps to delete such information.

13. Notification of Changes

You should review the Privacy Policy whenever you use the ICPR in order to be aware of the ways that your information is used. The ICPR reserves the right to change the Privacy Policy at any time, without prior notice. You may direct any questions or concerns in regards to our Privacy Policy or changes to it, to the ICPR Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . A copy of your correspondence may be retained at The Cholangiocarcinoma Foundation home office and also by the responding individual.

14. Agreement

You must read and agree to this Privacy Policy in its entirety, prior to using any portion of the ICPR located at www.cholangiocarcinoma.org (“Website”). By establishing an account on the ICPR, you agree to all the terms of the Privacy Policy. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the ICPR.

The ICPR is wholly owned and operated by The Cholangiocarcinoma Foundation, a registered 501 (c) 3 non-profit organization. The ICPR respects your privacy and has written the Privacy Policy so that you are aware of and understand that all of the information the ICPR collects from you, is protected as well as how it is or may be used. If you have any questions, concerns or comments regarding the Privacy Policy or you feel that the ICPR is not abiding by its posted Privacy Policy, please contact the ICPR Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it