For Researchers and Trial Teams
The NF registry represents the international collaborative efforts of patients diagnosed with NF which includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (also called NF2). The database was created in order to accelerate research and therapy development for patients affected by NF.
The database houses the information necessary to determine the prevalence and natural history of the disorders and to assist in identifying appropriate candidate patients for a particular study. Identifiable information for registry participants will never be released by CTF. For centers conducting clinical trials, participants who may be candidates for studies will be contacted by CTF and provided with contact information; if the patient is interested in potential participation in a study, he or she will make contact with the study center.
There are two main ways to use Registry data:
1. Recruit patients for an IRB-approved clinical trial or research study.
2. Request de-identified data maintained in the NF registry for data analysis.
All requests are reviewed by the Data Access Committee, consisting of NF clinicians, NF patients, and NF care advocates.
For all requests, or with questions, email firstname.lastname@example.org