Protecting your privacy

Our highest priority

The Colon Cancer Family Registry’s (CCFR) most valuable resource is the information you generously provide, and it remains our highest priority to protect it. We employ and adhere to strict regulations to manage how your information is collected, how it is stored, who can access it, and how it can be used.

All CCFR sites are granted and operate under the approval of their own Institutional Review Boards (IRB).  This approval is renewed on a yearly basis through a renewal application. The IRB approves all aspects of the research study and ensures that it meets the required ethical criteria.

All identifying information you provide, such as names, addresses, emails, and Medicare/social security numbers, are stored securely and separately to all other information that may be used in our research. Each participant is assigned an ID number on entry to the study and used to identify you on all subsequent study materials (including blood samples) throughout the lifespan of the research.

De-identified research data is transferred periodically and securely from each CCFR site to the CCFR central data repository via end-to-end encrypted electronic transfer. The CCFR itself never obtains your name, address, or other identifying information as these are maintained at your CCFR site. To learn more about how your site cares for your data and study materials, contact them here.

The CCFR central data repository is managed by CCFR Informatics Manager Maggie Angelakos at the University of Melbourne. The data repository is supported by the university’s dedicated Research Computing Services team, which provides specialized research data storage systems to maintain privacy, longevity, and security of your data. The CCFR only shares data with ethically approved researchers in a de-identified format, meaning full dates of birth are not provided.