Collection of Information
The Registry must follow rules to protect information about you, such as the GDPR (General Data Protection Regulation) and HIPAA (Health Insurance Portability and Accountability Act). Federal and state laws also protect your privacy. The Registry is committed to the protection of all participant’s data and GDPR and HIPAA compliance. All of the information users provide will be maintained in a commercial-grade, cloud-based, HIPAA compliant, encrypted data center, and any information that could identify a user will not be shared without their express consent.
Use and Disclosure of Information
The study aims to share detailed medical and other information with researchers while protecting your privacy. One way the registry protects your privacy is to remove the name, address and other “identifying” information from your medical information before sharing it with researchers. This information is considered “de-identified” because it has had all personal identifiers removed including your name, address or other information that identifies you or your family. The data collected will be labeled with a unique code and stored on secured computers.
The Project 8p Foundation will not share identifiable information with anyone outside the registry (unless you give prior permission to share it). Approved researchers and clinicians will be allowed to see only the de-identified information. Approved researchers and clinicians may use de-identified information to conduct research, including research on diseases unrelated to the participant’s disease. If researchers or clinicians want to recruit patients for their studies, only the Project 8p Foundation Registry Administration will identify participants and serve as the intermediary for such researchers and clinicians, on behalf of the patients. If a patient looks like a good match for a researcher’s study, the Project 8p Foundation Registry Administration will contact you if you opted in to be re-contacted. The researcher will not be able to contact you directly. The Project 8p Foundation will provide you with information about the study and a way to contact the researcher.
Although we take many measures to protect your privacy and confidentiality, because Chromosome 8p rearrangement is rare, there is a small risk that you may be identifiable from the information in the study.
Generally, only the Project 8p Foundation Registry Administration will know that you have given information and will see your information. However, there are a few exceptions that are listed here.
The following parties are authorized to use and/or disclose your health information in connection with this research study:
- The Principal Investigator, Mrs. Bina Shah
- Sub-Investigator: Dr. Ehsan S. Yazdi
- Project 8p Foundation Registry Administration of key personnel
- The Institutional Review Board (IRB) overseeing this study
This access is for quality purposes and to respond to questions you may have as you enter information into the registry.
Any information users provide to third party clinicians or professionals with whom they have elected to contact through the Chromosome 8p Registry will be subject to their policies with respect to privacy and nondisclosure of information. We encourage users to familiarize themselves with those policies.
Note: Any data that has already been authorized and shared with a third party, or has been shared in a scientific publication may not be retrievable.
Protection of User Information
Log Files and Web Beacons
The Chromosome 8p Registry may use log file information that records information sent by a user's web browser, which may include information such as the user's web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information, to analyze trends and track the movement of users anonymously. IP addresses are not linked to personally identifiable information.
The Chromosome 8p Registry may also employ “web beacons” (also known as clear gifs) to track online 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 sent to users.
By using the Chromosome 8p Registry, or registering or subscribing for services provided on or through this website, users consent to being contacted by the Chromosome 8p Registry and related entities, and to receiving such updates and information.
The Chromosome 8p Registry encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the Chromosome 8p Registry cannot control, and assumes no responsibility for, any contact of users by related entities, including its advocacy partners.
The Chromosome 8p Registry reserves the right to disclose a user's 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 the Chromosome 8p Registry, Project 8p Foundation, or Ordinal Data, Inc.; (ii) protect and defend the rights of the Chromosome 8p Registry, Project 8p Foundation, or Ordinal Data, Inc., and (iii) act under exigent circumstances to protect the personal safety of users or the public.
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