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Clinical Trials

Learn more about Clinical Trials and the search treatments for all forms of NF. 

About Clinical Trials

Clinical trials are studies in which people volunteer to help researchers find answers to specific questions about their health. Clinical trials are the best way to find new treatments or practices that will better the lives of individuals with NF.

Read more about clinical trials on the Federal Food and Drug Administration’s website by clicking here.

Click the button below to read CTF’s resource for patients considering joining an NF Clinical trial.

About Clinical Trials

NF Registry

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. Patients can find more information about current clinical trials for NF at the NF Registry website by clicking “Clinical Trials.”

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

  1. Keeping patients informed about NF news and current research (including tests of new treatments)
  2. Helping NF researchers learn about NF from the patient perspective by providing a source of anonymized information from thousands of patients
Visit NF RegistryLearn More
Colorful Logo that reads NF Registry

NF Clinical Trials Consortium

The Neurofibromatosis Clinical Trials Consortium (NFCTC) was established by the Department of Defense Neurofibromatosis Research Program (NFRP) to develop and perform clinical trials for the treatment of NF complications in children and adults. The Consortium is composed of fifteen clinical sites, ten collaborating affiliate sites, and an Operations Center at the University of Alabama at Birmingham under the direction of Dr. Bruce Korf.

This presentation about the NF Clinical Trials Consortium was presented live on June 23, 2023 at the Children’s Tumor Foundation NF Summit in Scottsdale, Arizona.

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