Privacy Policy

Your confidentiality and security are critical to us.

Your privacy is on our minds and if you register with the NF Registry we pledge to protect your privacy. The Children's Tumor Foundation (CTF), the NF Registry's parent body, is the only organization that will have direct access to the information collected, and CTF will not use your data for any fundraising or patient-education purposes. The NF Registry is about research, and we intend to keep it that way.

The information in the NF Registry is deidentified when it is aggregated for research purposes. This means that we do not share your name or any identifying information.

All data collected is stored in a secure, top-tier computer database with well-vetted security strategies to minimize the risk of a confidentiality breach.