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The NF Registry is a secure website that allows people living with all forms of NF to take an active role in the search for better treatments. Joining the Registry is as simple as filling out a survey once each year about your symptoms and experiences.

Participating is safe, easy, and secure. For those under age 18, a parent or legal guardian/caretaker must complete the survey.

The Children’s Tumor Foundation has sponsored the Registry since 2012 with two main goals in mind:

  • Keeping patients informed about NF news and current research (including tests of new treatments)
  • Helping NF researchers learn about NF from the patient perspective by providing a source of anonymized information from thousands of patients

The Registry now has over 11,000 participants. This is terific—but 11,000 represents a very small percentage of the world’s population of individuals living with NF. The more people who participate, the greater the impact will be, and the more we learn about the many ways NF impacts patients from around the world.

The NF Registry is available in six languages: English, French, Italian, Portuguese, Spanish, and German.

Ready to Join?

Watch this NF Registry sign-up tutorial.

Registry Provider

Guided by feedback from the NF community and our own experience in analyzing registry data, CTF identified OpenApp, a company focused only on registries, as the best partner.  We worked with them to design a system that lets users move through the surveys faster and with less repetition. OpenApp also offers a global registry, with affordable translations into other languages and years of experience meeting strict European requirements for privacy protection.

Frequently Asked Questions

Why should I join the NF Registry?

  • Learn of potential new treatments for medical or general well-being with an NF focus
  • Stay informed about NF news, such as care guidelines and medication approvals
  • Be active in fighting NF – We are stronger together
  • Help researchers better understand NF

How do I know my information is protected?

  • The updated Registry platform meets the newest and most stringent requirements for data privacy and security, the General Data Protection Regulation (GDPR)
  • Your data can be used for research and other scientific goals of the Registry, and nothing else
  • Be active in fighting NF – We are stronger together
  • Your personal identifying information is stored separately from your survey data, in a separate server

What has the NF Registry accomplished so far?

  • Alerted participants to more than 50 research opportunities
  • Sped up study recruitments for faster results
  • Focused research to match patient priorities
  • Attracted pharmaceutical companies to the NF field
  • Provided data for eight research articles and presentations

Questions?  Contact Kate Kelts, Patient Support Coordinator

Partnership Opportunities

Do you want to see the registry in another language?

Contact us at the NF Registry to learn about how your group can sponsor translation of the Registry into your country’s language and receive recognition and a role in Registry leadership.

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