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Clinical Trials

Although as yet there is no cure for either neurofibromatosis or schwannomatosis, there are often clinical trials available. Follow the links below to learn more about the various studies available.

Schwannomatosis Registry (for Schwannomatosis patients)
Study Description: This database is maintained with the vision of bringing together patients with schwannomatosis who want to help us learn more about this disease with researchers who are sponsoring trials. We hope that by connecting patients and researchers more effectively, we might better understand schwannomatosis as a disease and design helpful treatments that can begin to be tested.

Concentration and Activity of Lapatinib in Vestibular Schwannomas (for NF2 patients)
This study is exploring whether a drug that is approved by the FDA and is currently used to treat breast cancer might also work to treat VS. This study will measure the amount of drug that travels from the bloodstream and arrives at the tumor. This drug is safe and has few side effects. If this drug is shown to reach the tumor, it might be used in the future to treat VS without needing surgery or radiation.

Bevacizumab for Symptomatic Vestibular Schwannoma in Neurofibromatosis Type 2 (NF2) (for NF2 patients)
This study is exploring whether a drug that is approved by the FDA and is currently used to treat other tumors might also work to treat VSs. Based on people who have taken this drug to treat VSs already, there is some reason to think that it might be helpful to certain people with NF2. People enrolled in this study will receive the drug one time every three weeks for one year by infusion. This study will follow subjects over the course of the year that the person is taking the drug and for six months after the drug is stopped.


Interested in More Clinical Trials?

To find more clinical trials, visit clinicaltrials.gov.

Take Part in the Future of NF Research

If you are an adult with NF or the parent or guardian of a child with NF, joining the NF Registry is an easy way to get involved and contribute to better understanding and more effective treatments. The NF Registry, created by the Children's Tumor Foundation, is a listing of volunteers for participation in clinical trials, and those willing to share information so researchers can use secure methods to identify trends and characteristics of NF incidence and clinical course.

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For assistance with making an appointment, please contact the Johns Hopkins Comprehensive Neurofibromatosis Center at 410-502-6732.
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