The NF Registry is a unique opportunity for NF patients to learn about and take an active role in the development of next phase therapies through information sharing in a confidential, high-impact resource. The registry itself is hosted in the most-advanced secure setting in partnership with experts in this field, an Irish-based company called OpenApp.
The NF Registry enables NF patients and their caregivers to take an active role in the search for better treatments for all forms of NF. The Children’s Tumor Foundation in the United States has sponsored and managed the NF Registry since 2012, with two core goals in mind:
- Keeping NF patients informed about NF research advancements and current or new clinical trials
- Helping NF researchers learn about NF from the patient perspective, through the availability of anonymised information from patients around the world.
Learn more, and join the confidential NF Registry by clicking here.
