Privacy Policy & Terms and Conditions

Please read this Chromosome 8p Registry “Privacy Policy” and the “Terms and Conditions” prior to using any portion of this website. By using the Chromosome 8p Registry, the user agrees to all the terms of the Privacy Policy. If the user does not agree with the terms of this Privacy Policy, they may not use any portion of the Chromosome 8p Registry.

General

The Chromosome 8p Registry 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 priority is to make sure that users are confident in the security of the data they share with us. The Privacy Policy outlines the type of information the Chromosome 8p Registry collects from the users, 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 this page. We encourage users to review the Privacy Policy periodically for any updates or changes.

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.

The Chromosome 8p Registry may employ independent contractors, vendors and suppliers ("Outside Contractors") to provide specific services and products related to the Chromosome 8p Registry, including but not limited to, performing 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 Chromosome 8p Registry and the services provided. These Outside Contractors may have limited access to information collected in the Chromosome 8p Registry, including personally identifiable information, in the course of providing such products or services. Outside Contractors will be required to conform to this privacy policy and HIPAA standards, maintaining confidentiality and appropriate security in downloading, storing and using data from the Chromosome 8p Registry.

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

All users are required to review and abide by the Terms and Conditions and the Privacy Policy. The Chromosome 8p Registry uses commercially reasonable methods to protect the security of information and data submitted. The Chromosome 8p Registry employs best practices from our networking to our secure servers to protect user's data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Wherever passwords, ID numbers, or other special access features are used on the Chromosome 8p Registry, users should take special care to safeguard them.

Cookies

The Chromosome 8p Registry, does not use cookies to track usage or to identify a user's computer or browser.  The Chromosome 8p Registry does anonymously track site navigation to identify the parts of the website that are of greater or lesser interest, so that we can adjust the information provided accordingly.

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.

Website Links

The Chromosome 8p Registry contains links to other websites. The Privacy Policy applies solely to information collected on or submitted to the Chromosome 8p Registry.  The Chromosome 8p Registry is not responsible for the privacy practices of other sites linked on this website.  The Chromosome 8p Registry encourages users to read the privacy policies of linked websites when they connect to them through this website.

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.

Required Disclosures

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.

Contact Us, Member Accounts

If a user elects to contact the Chromosome 8p Registry through a webform or contact information provided on this 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, and certain profile and account information. The Chromosome 8p Registry 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 the Chromosome 8p Registry and is subject to the terms detailed in the Privacy Policy.

Children Under The Age Of Thirteen (13)

The Chromosome 8p Registry is unable to prevent children under the age of thirteen (13) from visiting this website; however, no part of our 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 this website at any time or in any manner. In order to comply with the U.S. Children's Online Privacy Protection Rule ("COPPA"), the Chromosome 8p Registry will not knowingly collect personally identifiable information provided by a child under the age of thirteen (13).  By providing personally identifiable information through the Chromosome 8p Registry, including but not limited to, name and e-mail address, the user represents and warrants that they are at least thirteen (13) years of age and that they agree to comply with the Privacy Policy.  If, at any time, Cure CMD learns that personally identifiable information has been provided by persons under the age of thirteen (13) without verified parental consent, the Chromosome 8p Registry will take the appropriate steps to remove such information from this website.

Notification Of Changes

Users should review the Privacy Policy whenever they use the Chromosome 8p Registry in order to be aware of the ways in which provided information is used. The Chromosome 8p Registry reserves the right to change the Privacy Policy at any time, without prior notice.