Using the NF Registry in Research

Описание: The NF Registry represents the collaborative efforts of patients from around the world diagnosed with NF, including neurofibromatosis type 1 (NF1) and all forms of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly called neurofibromatosis type 2. The database was created 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 as well as to assist in the identification of appropriate candidate patients for a particular study, all of whom have agreed to be contacted by CTF about potential beneficial research. 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 contact the study center.

There are two main ways to use NF 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.
The Data Access Committee, consisting of NF clinicians, patients, and care advocates, reviews all requests.

For all requests, please contact Kate Kelts at [email protected]

What is the Children's Tumor Foundation?
Founded in 1978, the Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.

Visit our website at https://www.ctf.org/
Donate today at https://www.ctf.org/ways-to-give/

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