Learn more about Clinical Trials and the search treatments for all forms of NF.
Clinical Trials
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.
Search for NF Clinical Trials
Clinical trials help identify potential new treatments that will benefit patients living with NF. The number of clinical trials for NF has increased to three times the number of trials from just a decade ago. Many of these potential treatments are directly due to research sponsored by the Children’s Tumor Foundation.
To search for active or upcoming clinical trials in the USA, each of the NF-specific links below will open a search at ClinicalTrials.gov. At this link are tips for navigating your search on that website.
Search for clinical trials in Europe by clicking the NF-specific links below
Tips for your Clinical Trials search
- “Targets” are the part of the disease that the drug tries to stop.
- “Agents” are the drug names.
- “Phases” are the current stage of research. The higher the number of the Phase, the closer the treatment is to being approved for use in NF patients.
- Phase 0 is very early stage testing
- Phase 1 tests for drug safety
- Phase 2 tests whether the treatment works.
- Phase 3 tests whether the new treatment is better than existing treatments
When searching for NF2-Related Schwannomatosis Clinical Trials
NF2-related schwannomatosis (NF2-SWN) was referred to as “neurofibromatosis type 2” or NF2 until May 2022. For the time being, if you are interested in NF2-SWN, we suggest searching for both of these terms.
At this link are tips for navigating a search for clinical trials on the ClinicalTrials.gov website.
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:
- Keeping patients informed about NF news and current research (including tests of new treatments)
- Helping NF researchers learn about NF from the patient perspective by providing a source of anonymized information from thousands of patients
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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