Introduction and Study Overview

Thank you for your interest in the Emory Cleft study. To see whether you may be a candidate for this study, we need to ask you for some information about yourself. But first, let me tell you about this screening survey and what we will do with your information.

  1. This screening interview will take about 5 minutes.
  2. You can also stop the screening survey at any time. This is completely voluntary.
  3. We will ask you for your name and contact information, and ask questions about you and/or your child's health that is relevant for our study, and will record this information in a database containing information from others who have also shown interest in the study.
  4. This information will only be used for the research study you are interested in.
  5. The only risk to you in this phone screening is a potential loss of privacy. However your privacy is very important to us and we will be very careful with your information.
  6. Your health information that identifies you is your "protected health information" or "PHI." We will use your PHI to screen you for our research study.
  7. The PHI we will use for this screening includes your name, email, and phone number.
  8. To protect your PHI, we will follow federal and state privacy laws, including the Health Insurance Portability and Accountability Act (called HIPAA or "the Privacy Rule" for short).
  9. If you are found not to be eligible for the study, or if you choose not to participate, then your information will be stored in our online database so that we have a record of contact and do not try to recruit you again. If you wish for us to remove you from this list, we will do so. Access to this database will be limited to the Principal Investigator and the research staff, and will not be shared with other parties.

If you are found to be eligible and choose to participate, your information will be stored in our online study database, and the following persons or groups may use and/or disclose your PHI for this study:

  • The Principal Investigator and the research staff
  • Emory offices who are part of the Human Research Participant Protection Program, and those who are involved in research-related administration and billing
  • We will disclose your PHI when required to do so by law in the case of reporting child abuse or elder abuse.

You may revoke your authorization at any time by calling the principal investigator, Dr. Elizabeth Leslie.

If identifiers (like your name, address, and telephone number) are removed from your PHI, then the remaining information will not be subject to the Privacy Rules. This means that the information may be used or disclosed with other people or organizations, and/or for other purposes.

Your authorization will not expire because your PHI will need to be kept indefinitely for research purposes.

We can send you a copy of this information, if you would like.

Contact Information

If, at any time, you have questions about this screening process, your rights as a research participant, or if you have questions, concerns or complaints about the research you may contact the Cleft Project study team coordinator, or the Emory Institutional Review Board.

Cleft Project Study Team: 404-727-2825 or cleftproject@emory.edu

Emory Institutional Review Board at 404-712-0720 or toll-free at 877-503-9797

or by email at irb@emory.edu

You can also stop the screening interview at any time. This is completely voluntary.

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