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.
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.
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
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
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.
7.1 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
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
13. CHILDREN UNDER THE AGE OF THIRTEEN (13)
14. NOTIFICATIONS of CHANGES
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