Privacy policy

Overview

PSC Partners Seeking a Cure is committed to protecting the privacy of our families.  Your privacy and the security of the data you provide are of the utmost importance to us.  Because we gather medical information, we feel you should fully understand the terms and conditions surrounding the use of that information.  We understand your medical information is a very personal subject, and we want to make sure you are as comfortable as possible if you choose to share that information.  

We provide this notice to explain our information practices. To make this notice easy to locate, we make it available as a link on our registry home page. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information and content of your correspondence with us.

When you contact the PSC Partners Seeking a Cure Patient Registry at This e-mail address is being protected from spambots. You need JavaScript enabled to view it This e-mail address is being protected from spambots. You need JavaScript enabled to view it or use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within PSC Partners Seeking a Cure or our professional advisors for a response. A copy of your correspondence may be retained at the PSC Partners Seeking a Cure home office and also by the responding individual.

PSC Partners Seeking a Cure has established and maintains a mailing database that would include registry participants who are part of the PSC Partners Seeking a Cure community. The mailing list includes families of affected individuals, friends, relatives, physicians, scientists, contributors and others interested in primary sclerosing cholangitis (PSC). PSC Partners Seeking a Cure will never release our mailing list or the names of our member families to any outside organization or third party. However, if an outside organization sends us information for distribution to PSC Partners Seeking a Cure families, we may mail it to you if the PSC Partners Seeking a Cure Board of Directors approves the mailing.

Confidential information may only be released by the written or verbal permission of the person or organization identified. Verbal permission can only be given for a specific release. Any general release, such as a release of information including personal identifying data,must be in writing. The PSC Partners Seeking a Cure Patient Registry web site provides links to other sites that may be of interest. PSC Partners Seeking a Cure is not responsible for the privacy practices or content of other such web sites.

PSC Partners Seeking a Cure is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs relating to the PSC Partners Seeking a Cure Patient Registry. Every reasonable effort will be made to maintain the security of all personal information in our possession. Access to personal information will be limited to PSC Partners Seeking a Cure board members assigned to work on the Patient Registry and a small number of qualified and approved individuals who need to access such information in the course of their work on the registry. In all instances, this work will be directly overseen by a member(s) of the PSC Partners Seeking a Cure Board. All individuals working for the Patient Registry will be instructed in the confidentiality requirements of the organization.

You must read the PSC Partners Seeking a Cure Registry Privacy Policy (the “Privacy Policy”) and the Registry Website terms and conditions (the “Terms and Conditions”) prior to using any portion of the PSC Partners Seeking a Cure Patient Registry Website located at www.pscpartnersregistry.org (the “Registry Website”). By using the Registry Website, 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 Registry Website.  The Registry Website is owned and operated by PSC Partners Seeking a Cure (referred to herein as “PSC Partners”).  PSC Partners respects your privacy and has written the Privacy Policy so that you are aware of the information PSC Partners collects from you, how that information is protected, and how it is used.  If you have any questions or comments regarding the Privacy Policy, or you feel that PSC Partners is not abiding by its posted Privacy Policy, please contact usvia registered mail at:

Ricky Safer, CEO
PSC Partners Seeking a Cure
5237 South Kenton Way
Englewood, CO 80111
By phone: (303) 771-5227
By fax: 303-221-0757
By email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
 
1. GENERAL
1.1 PSC Partners has the highest regard for your privacy. We realize that our service can only work if we build trust with our user communities. For that reason, our first priority is to make sure users are confident in the security of the data they share with us. This Privacy Policy outlines the type of information PSC Partners collects from the users of the Registry Website and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time and without prior notice by posting amended terms and conditions on the Registry Website. We encourage you to review the Privacy Policy periodically for any updates or changes.                                                                                                                                      

2. COLLECTIONS, USE AND DISCLOSURE OF INFORMATION
2.1 De-identified and Identifiable Information.  Information collected on the Patient Registry can be categorized as either de-identified or identifiable. De-identified information is information that can’t be traced to a specific individual. Identifiable information tells us exactly who you are. This information allows you to access your registry and allows the Patient Registry to communicate with you.

2.2 Collection of Information.  All of the information you provide to the PSC Partners Registry will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent.

2.3 Use and Disclosure of Information.The goal of this patient registry is to make the information you provide searchable, while protecting your identity. Your information will be de-identified before it is transferred to the Global Rare Disease Registry (GRDR) of the National Institutes of Health (NIH) or, in the future, to other academic or medical databases or registries.

De-identified data (information where all personal identification has been removed) gathered from this profile will be made available to participants of the Patient Registry and to the GRDR 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. PSC Partners will perform searches for specific questions within the PSC Partners Registry and provide reports back to you and the medical research community. You can also perform searches of this de-identified data. 

Any information you provide to third party genetic counselors or other professionals whom you have contacted through the Registry Website will be subject to their policies with respect to privacy and nondisclosure of information. We encourage you to familiarize yourself with those policies.

PSC Partners may employ independent contractors (“Outside Contractors”) to provide specific services and products related to the Registry Website or to the services provided on the Registry Website, 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 to users, and developing applications for the Registry Website and the services provided on the Registry Website. These Outside Contractors will have limited access to information collected on the Registry Website, including personally identifiable information, in the course of providing such products or services.

3. WITHDRAWAL OF INFORMATION
3.1 At any time, you reserve the right to withdraw your information from the registry database by contacting the PSC Partners Coordinator, and your profile will be removed. De-identified data shared with the GRDR will also be removed. However, de-identified data cannot be retrieved from researchers that have already accessed it prior to your request for removal.

4. PROTECTION OF USER INFORMATION
4.1 All users are required to review and abide by the Registry Website Terms and Conditions and the Privacy Policy.  PSC Partners takes steps to ensure that your information is treated securely and in accordance with this Privacy Policy. We use commercially reasonable methods to protect the security of information and data submitted to the Registry Website. We employ best practices from our networking to our secure servers to protect your data from intrusion. Users 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 Registry Website, you should take special care to safeguard them. It is also important for you to help protect against unauthorized access to your information. You are solely responsible for signing off of our Registry Website each time you finish using it and for securing your log-in information and security responses. Any transactions using your log-in and security responses will be deemed to be authorized by you.

5. OWNERSHIP OF INFORMATION
5.1 All of the information you provide to PSC Partners in connection with the RegistryWebsite is owned by PSC Partners.

6. THIRD PARTY NOTIFICATIONS
6.1 PSC Partners reserves the right, in its discretion, to allow third parties to provide notices to those who visit the Registry Website. These third parties may use information you provided on this Website (excluding your name, address, email address or telephone number) and other sites in order to provide relevant notifications on the Registry Website and other sites about services that may be of interest to you.  PSC Partners will encourage such companies or organizations to follow best practices with respect to the collection and use of non-personally identifiable information and personally identifiable information that was not obtained from your participation on the Registry Website; however, PSC Partners assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.

7.COOKIES
7.1 A cookie is a small data file that some Web sites write to your hard drive when you visit them. When you visit the Registry Website, we may send one or more cookies to your computer that will uniquely identify your browser. These cookies cannot collect or store your identifiable information. They are used to keep your place while you are logged and can track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Registry Website. If users reject the cookie, they may still use the Registry Website. 

8. LOG FILES; WEB BEACONS
8.1 PSC Partners 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 analyze trends, administer the Registry Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information. PSC Partners 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.

9. WEBSITE LINKS
9.1 The Registry Website may contain links to other Websites. The Privacy Policy applies solely to information collected on or submitted to the Registry Website. PSC Partners is not responsible for the privacy practices of other sites linked to the Registry.  PSC Partners encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Registry Website.

10. COMMUNICATIONS FROM PSC PARTNERS
10.1 From time to time, PSC Partners, or other related entities, will notify users of updates and other valuable information about PSC Partners, the Registry Website and related clinical and research information. By using the Registry Website, or registering or subscribing for services provided on or through the Registry Website, users consent to being contacted by PSC Partners and related entities, and to receiving such updates and information. PSC Partners encourages related entities to follow best practices with respect to email communications, security and privacy. However, PSC Partners cannot control, and assumes no responsibility for, any contact of users by related entities.  In the case of emails coming directly from PSC Partners, such emails will clearly be from PSC Partners and will include instructions on how to unsubscribe from future emails.

11. REQUIRED DISCLOSURES
11.1 You understand and agree that PSC Partners may disclose information provided if in its good faith belief such disclosure is required by applicable law.

12. CONTACT US; MEMBER ACCOUNTS
12.1 If a participant elects to contact PSC Partners through contact information provided on the Registry Website, or registers for an account, the user may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing their inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration).  PSC Partners stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then owned by PSC Partners Patient Registry and subject to the terms detailed in the Registry Privacy Policy.

13. CHILDREN UNDER THE AGE OF THIRTEEN (13)
13.1 PSC Partners is unable to prevent children under the age of thirteen (13) from visiting the Registry Website; however, no part of our Registry Website 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 Registry Website at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, PSC Partners will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Registry Website including, but not limited to, your name and e-mail 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, PSC Partners learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, PSC Partners will take the appropriate steps to delete such information.

14. NOTIFICATIONS of CHANGES
14.1 Please review the Registry Privacy Policy whenever you use the Registry Website in order to be aware of the ways that your information is used.  PSC Partners reserves the right to change the Patient Registry Privacy Policy at any time, without prior notice.

15.SHARING PERSONAL INFORMATION ONLINE

Please keep in mind that whenever you voluntarily disclose personal information online - for example on message boards, through e-mail, or in chat areas - that information can be collected and used by others. In short, if you post personal information online that is accessible to the public, you may receive unsolicited messages from other parties in return.

Date effective:  July 1, 2013