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Updated NF Registry Unites Neurofibromatosis Patients and Serves as Critical Resource in Fight to End NF

By July 14, 2020December 18th, 2023NF1, NF2-SWN, Science & Research, SWN

The NF Registry is a secure resource where patients living with NF can take an active role in the search for better treatments for all forms of NF. With over 9,000 participants, the Registry has already made tremendous impact on NF research: it has alerted participants to over 50 clinical trials, sped up study recruitments for faster results, focused research to match patient priorities, and attracted pharmaceutical companies to the NF field.

Guided by feedback from the NF community and combined with expert knowledge in analyzing registry data, the Children’s Tumor Foundation assessed that a new platform provider could help even further improve the NF Registry. Starting today, the NF Registry is now managed by OpenApp, a company focused exclusively on patient registries. This change will let users move through the surveys more efficiently and with less repetition, as well as make the registry more engaging and accessible in other languages.

The goals of the NF Registry remain the same, and are essential to the fight to end NF:

·       Keeps patients informed about the latest in neurofibromatosis information and current clinical trials (including tests of new treatments, such as MEK)

·       Helps NF researchers learn about NF from the patient perspective, by providing a source of anonymized information from thousands of individuals all over the world

Participating remains safe, easy, and secure. For those under age 18, a parent or legal guardian/caretaker fills out the survey. For those already in the NF Registry, there is no need to do anything – you can update your record, as needed, at your discretion. For those who haven’t yet joined, this is a great time to join the thousands of others living with NF in a united fight to NF.  Learn more and join the NF Registry at