Participate in Research
People with NF play an important role in the development of new treatments of neurofibromatosis by participating in clinical trials. Today, there are several potential drugs in development for the treatment of NF. Unfortuanelty most of the clinica trials are underway in the U.S., and the new therapies can only be made available to the people who meet the requirements of the different clinical trials. Even if you can’t participate, keep the faith that a cure for NF is being sought.
National Institutes of Health Clinical Trials
View all of the current clinical trials sponsored by the National Institutes of Health.
UCLA Clinical Trial
Professor Alcino Silva at UCLA announces a clinical trial to establish the safety Lovastatin on humans with NF1 in hopes that it could be a potential treatment for cognitive deficits associated with NF1. Learn more about the clinical trial.
NF Consortium Clinical Trials
The NF 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 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.
Washington University’s NF Center Launches Internet-based NF1 Registry
The Washington University Neurofibromatosis (NF) Center is launching a unique internet-based NF1 Registry that will collect medical information to help physicians and researchers better understand the spectrum of medical problems found in children and adults with NF1. All individuals with a diagnosis of NF1 are eligible to complete the 30-minute online questionnaire.
The information collected from the NF1 Registry will be used to better characterize the relationships between specific problems in NF1. To access the registry, simply go to the NF Center homepage and click on the “NF1 Registry”.
Washington University’s NF Center Launches a DNA Bank for Future Genetic Research
The Washington University Neurofibromatosis (NF) Center has established a one-of-a-kind NF1 DNA Bank that will collect blood samples from individuals with NF1. The 5 mL blood samples will be used to extract DNA for future research aimed at identifying children at greatest risk for specific medical problems associated with NF1. Participants are also asked to fill out a short questionnaire. The information gathered from the questionnaire and medical record (if available) is then linked to the participant’s DNA on a secure server at The Washington University School of Medicine.
With advancing technology in the field of genome science, scientists and physicians at the NF Center are working together to determine how subtle changes in our DNA lead to the wide variety of medical problems seen in people with NF1. Knowledge gained form these studies will help doctors and scientists better predict who will develop these problems, and may lead to the design of more effective drug therapies.
Blood is taken in the outpatient lab at St. Louis Children’s Hospital at no cost to the participant. All family members with a diagnosis of NF1 are encouraged to give blood. Arrangements can also be made to obtain blood samples drawn at locations other than St. Louis Children’s Hospital. Interested families should contact Team NF at NFClinic@neuro.wustl.edu.
The Friedman Lab is a Canadian NF research lab, housed at the University of British Columbia. The director, Dr. Jan Friedman, has a 30 year history of NF research and is a world expert on NF1, NF2 and Schwannomatosis. If you would like to be kept up-to-date regarding the various Canadian research or treatment trials or opportunities, please go to the lab’s web site and contact lab manager, Patricia Birch via the web site’s link.