Privacy Policy

Your confidentiality and security are critical to us. If you choose to enroll in the NF Registry, we pledge to protect your privacy according to recognized standards for data security using methods including the following:


  • 1. Restricted Access

  • The Children's Tumor Foundation (CTF), the NF Registry's parent body, CTF Europe, its affiliate, and the platform provider, OpenApp, are the only organizations that will have direct access to the information collected.
  • 2. Research Use Only

  • CTF will not use your data for any fundraising or non-research purposes. The NF Registry is about research, and we intend to keep it that way.
  • 3. De-identified Data

  • The information in the NF Registry is de-identified as defined in the HIPAA privacy regulation [45 C.F.R. §164.514 (b)(2)] when it is aggregated for research purposes. This means that we do not share your name or any identifying information.
  • 4.State-of-the-art Data Protection.

  • All data is stored in a secure, top-tier computer database to minimize the risk of a confidentiality breach.