Registry Oversight

The Chromosome 8p Registry protocol, informed consent statement, and other participant facing documents have been reviewed by an Institutional Review Board (IRB)to ensure ethical language and behavior in our practices. Project 8p Foundation as the sponsor also maintains regular contact with our Medical & Scientific Advisory Board as well as our Board of Directors and Patient Leadership Board. 

Neither the IRB or our advisory or governing board has direct access to your data unless you specifically opt into sharing that data through the informed consent, or you reach out voluntarily to an individual or organization partner.

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.

More information can be found under the Privacy Policy and Consent Form.