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Neurofibromatosis Network

Leading NF Advocacy
Building NF Community

Participate in NF Research

Today, there are several potential drugs in development for the treatment of Neurofibromatosis. These new therapies can only be made available to the people who meet the requirements of the different clinical trials. Each study has a different set of requirements, which you can learn more about below. People with NF can play a critical role in the development of new treatments and the search for a cure by participating in clinical trials.

Anyone considering participating in a clinical trial should discuss the matter with his or her physician. The NF Network does not endorse or recommend any particular studies. If you or a loved one is interested in participating in NF research, please click the photo below to read our clinical trials brochure, and learn more about the clinical trial process and what that entails. 

ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more about clinical studies and about this site, including relevant history, policies, and laws.

Search NF Clinical Trials

The NF Clinical Trials Consortium is dedicated to conducting clinical trials to improve the quality of life of persons with neurofibromatosis. Since the discovery of the genes responsible for the different forms of neurofibromatosis, much has been learned about how the various problems associated with neurofibromatosis come about. This opens the door towards development and testing of medications that may be helpful in preventing or treating complications of the disorders. The NF Clinical Trials Consortium was formed in 2006 with funding from the U.S. Army Medical Research and Materiel Command to carry out clinical trials of such medications. The Consortium consists of thirteen clinical centers with 12 around the U.S.; 1 in Australia, and an Operations Center at the University of Alabama Birmingham to coordinate consortium activities. They are:

  • Boston/Harvard Center for NF and Allied Disorders
  • Children's Hospital at Westmead, University of Sydney
  • Children's Hospital Los Angeles
  • Children's National Medical Center
  • Cincinnati Children's Hospital Medical Center
  • Indiana University
  • Johns Hopkins Hospital
  • Massachusetts General Hospital
  • National Cancer Institute
  • New York University Medical Center
  • University of Alabama at Birmingham
  • University of Chicago
  • University of Pennsylvania
  • University of Utah
  • Washington University
  • Children's Healthcare of Atlanta
  • Texas Scottish Rite Hospital

For more information visit the NF Consortium website.

National Institutes of Health Clinical Trials

View all of the current clinical trials sponsored by the National Institutes of Health.

NF Consortium Clinical Trials

The NF Consortium is dedicated to conducting clinical trials to improve the quality of life of persons with Neurofibromatosis. The consortium consists of nine clinical centers around the U.S. To find out more about the clinical centers and clinical trials please visit the NF Consortium website.

 

The NF Network has partnered with Children’s Tumor Foundation to promote the NF Registry

The NF Registry is a database that gathers contact information and the effects of NF1, NF2 and Schwannomatosis from individuals affected by NF.  Your participation through a questionnaire will provide important information to NF Researchers.

The NF Registry protects your privacy. Patient Crossroads, which stores the information, uses the highest standards for data security. Your name, contact data, and identifying information are kept separate from the medical data: Only you and the NF Registry administrators can see it.

The NF Registry was created to move NF research and NF care forward by:

  • Letting people know about new clinical trials (new potential treatments) for NF
  • Providing patients with facts and figures about the NF community as a whole
  • Learning how NF changes over a person’s lifetime
  • Helping researchers understand what makes one person’s symptoms different from another's
  • Informing qualified NF researchers from all over the world about issues people with NF care about most

How do I register? Joining the NF registry is quick and easy. Go online to www.nfregistry.org, click “Join Registry Now,” and create your private account. The NF Registry will then ask some questions about the person with neurofibromatosis. The questionnaire should take less than 30 minutes to fill out. You don’t have to answer all of the questions, you can stop any time and return to it later if you need to. The information includes basic data—name, contact information, age, gender, and the like—and more specific questions about medical history, the NF diagnosis, and experiences with the condition.

They’ll ask you for permission to contact you later about:

  • Opportunities to participate in clinical trials or research studies.
  • Updating the information you have entered.

Remember: The NF Registry will only contact you if you give specific permission. Your information is never used for fundraising.