Privacy Policy

Is my information kept confidential?

All of your information is confidential.  Your information will not be shared with your spouse, children, employer, insurance companies, or anyone else without your written consent. The information on your enrollment form will not be used to contact your physician or any hospital/clinic.  Your information will never be used in an advertisement or sold as a mailing list. 

Where will my information be kept?

The information written on the enrollment form and any other questionnaires will be entered into a computer database at the University of Cincinnati College of Medicine, Department of Environmental Health.  The database is located in a secure University computer system.  Information is double password protected, so that only authorized personnel will have access to it.  Persons who will have access are Dr. Susan Pinney and the personnel who work under her direction in computer data entry and data processing.  All of these persons have signed a University of Cincinnati confidentiality of data agreement. This Registry project has been approved by the University of Cincinnati Institutional Review Board (IRB), which ensures protection of individual rights and confidentiality of data. The IRB has reviewed and approved our Registry protocol, consent forms, data collection forms and any recruitment tools (letters, brochures) to ensure that the rights of human subjects in research are protected.  

If you have any other questions about confidentiality, please call us at 513-558-0559.

Will my information be used in written reports?

The information you provide on the questionnaire may be reported as group statistics in Registry reports.  No individual will ever be identified in these reports. These reports will be used by researchers to plan their research studies.