Privacy Policy

The Internet-based evaluation for patients with gastrointestinal health problems conducted through this secure international Internet-based clinical and research system, the RFRI Investigator Platform (RFRI-IP), is designed to meet GDPR and HIPAA data privacy standards. The data collection methodology has been reviewed and approved by the ethics or human subjects review boards at each institution that uses the system to collect patient data.

The privacy of the information provided by patients is protected by this online system in the following ways:

No personal identifying information about patients is requested or stored in this online system: Not their names, no dates of birth, nor anything else that can reveal their personal identity.
No information about the specific electronic technology of the users, like IP addresses (the unique numeric internet "address" of their computer or mobile device), web browser or device type, or their physical location (geolocation), is collected in the database.
The system does not use any electronic cookies to capture or store any personal information. The only cookie used is simply a code to indicate whether the user is currently logged into the evaluation system.
Only clinic staff at each participating research site will know which data belong to which of their patients. This is done by referencing a password-protected linkage file securely stored in each clinic, that matches ID numbers and passwords with names and contact information of participating patients. The investigators and clinical staff operate under signed legally binding Data Use Agreements, by which they have committed not to share any information about the personal identity of patients using outside their own clinic, and have moreover agreed to use even the anonymous data exclusively in ways that are specified and permitted by the contract with the international research network.