2. Collection, Use and Disclosure of Information
a. Collection of Information. All of the information you provide to CRF will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent.
b. Use and Disclosure of Information. The goal of this registry is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identification has been removed) gathered from this profile will be made available to registrants of the Website 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. The CCIR Curator will perform the searches for specific questions within the CCIR registry and provide reports back to you and the medical research community. Registrants can also perform searches of this de-identified data. Some of this de-identified information will also be shared with databases focusing on a broader range of cystinosis. By creating a profile, a subset of de-identified information collected could be shared with global (international) databases. Among these databases is the National Institutes of Health in order to develop global knowledge of cystinosis for clinical treatments and clinical trials.
Any information you provide to third party genetic counselors or other professionals whom you have contacted through the Website will be subject to their policies with respect to privacy and nondisclosure of information. We encourage you to familiarize yourself with those policies.
CRF may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or to the services provided on the 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 Website and the services provided on the Website. These Outside Contractors may have limited access to information collected on the Website, including personally identifiable information, in the course of providing such products or services.
3. Withdrawal of Information
a. At any time, you reserve the right to withdraw your information from the Website registry database by contacting the CCIR Curator and your profile will be removed.
4. Protection of User Information
6. Ownership of Information
a. All of the information you provide to CCIR in connection with the Website is owned by CRF.
7. Third Party Notifications/Advertising
a. CRF reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. These companies may use information you provided on this Website (excluding your name, address, email address or telephone number) and other sites in order to provide advertisements or relevant notifications on the Website and other sites about goods and services that may be of interest to you. CRF will encourage such companies 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 Website; however, CRF assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
9. Log Files; Web Beacons
a. CRF 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 Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.
CRF 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.
10. Website Links
11. Communications From CRF
a. From time to time, CCIR or other related entities will notify users of updates and other valuable information about CCIR, the Website and related clinical and research information. By using the Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by CRF and related entities, and to receiving such updates and information.
CRF encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, CRF 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 CCIR, such emails will clearly be from CCIR and will include instructions on how to unsubscribe from future emails.
12. Required Disclosures
a. CRF reserves the right to disclose your personal information, without notice, if required to do so by law or in the good faith belief that such disclosure is necessary to: (i) conform to the edicts of law or comply with legal process served on CRF; (ii) protect and defend the rights of CRF, and (iii) act under exigent circumstances to protect the personal safety of users of the Website or the public.
13. Contact Us; Member Accounts
14. Children Under The Age Of Thirteen (13)
15. Notification Of Changes