Global Dystonia Registry
c/o Dystonia Medical Research Foundation
Attn: Privacy Issues
One East Wacker Drive, Suite 2810
Chicago, IL 60601
2. Collection, Use and Disclosure of Information
a. Collection of Information. All of the information you provide to the GDR will be maintained in a secure database maintained by Innolyst, Inc., and any information that could identify you will not be shared without your express written consent.
b. Use and Disclosure of Information. The GDR Steering Committee will perform the searches for specific questions within the registry and provide reports back to you and the medical research community. Some of this de-identified information will also be shared with databases focusing on the broader range of neurological diseases. By creating a profile, a subset of de-identified information collected will be shared with global (international) databases. This database may include the National Institutes of Health in order to develop global knowledge of dystonia for clinical treatments and clinical trials.
GDR Steering Committee may engage 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 GDR Coordinator and your profile will be removed.
4. Protection of User Information
5. Ownership of Information
a. All of the information you provide to the GDR in connection with the Website is owned by the GDR as previously disclosed.
6. Third Party Notifications/Advertising
a. The GDR reserves the right, in its discretion, to allow third parties, such as representatives of the Dystonia Coalition, an NIH supported clinical research network, to provide information 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 relevant notifications on the Website and other sites about services that may be of interest to you. The GDR 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, the GDR assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
8. Log Files; Web Beacons
a. The GDR 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.
The GDR 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 the GDR
a. From time to time, the GDR Steering Committee or other related, approved entities will notify users of updates and other valuable information about GDR, 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 the GDR and related entities, and to receiving such updates and information.
The GDR Steering Committee encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the GDR 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 GDR Steering Committee, such emails will clearly be from the GDR Steering Committee and will include instructions on how to unsubscribe from future emails.
11. Required Disclosures
a. The GDR Steering Committee 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 PPMD; (ii) protect and defend the rights of the GDR, and (iii) act under exigent circumstances to protect the personal safety of users of the Website or the public.
12. Contact Us; Member Accounts
13. Notification of Changes