Promising therapies are being developed to treat Neurofibromatosis (NF). These treatments are tested through clinical trials, which are only open to people who meet certain requirements. Each trial has its own specific criteria, which will be different for each trial. By joining a clinical trial, people with NF can play an important role in helping researchers find better treatments and, eventually, a cure.
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If you or your child has Neurofibromatosis type 1 (NF1) and haven't visited an NF Clinic Network (NFCN) clinic in the past year, you may qualify for a research study aimed at improving care during annual check-ups. The study involves completing two online surveys and an optional interview, with a chance to earn up to $150. Fill out the pre-screening survey here to get started. |
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The Development, Equity, and Resilience (DEaR) Lab in Florida State University is conducting a study on cognitive patterns and predictors in middle-aged and older adults with Neurofibromatosis Type 1 (NF1). Fill out the pre-screening survey here to get started. |
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NF1 Sleep Study in the Saxena Lab at Massachusetts General Hospital is interested in studying sleep, circadian rhythm, quality of life, genetics, and other functions in patients with neurofibromatosis type 1 (NF1).
They are looking for participants over 18 to participate in the study. The study will take two weeks to complete and involves the following: a remote (from home) initial consent visit, two weeks of home monitoring, online questionnaires and cognitive assessments, and a saliva sample. There are no in-person visits required. Participants will be compensated $50 upon completion of the study. In addition, we will provide you with a free personalized sleep report. please complete the online initial screening questionnaire at https://redcap.link/NF1Screen |
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The Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study will determine whether a blood test can detect malignant peripheral nerve sheath tumors (MPNSTs) in participants with NF1 earlier than the current standard of care. We are looking for 1,000 participants who: There will be the opportunity to earn up to $425.00 over the five-year follow-up period. You will also be participating in a study that could help improve the lives of people with NF1 in the future. Fill out the pre-screening survey here to get started. |
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.
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 several clinical centers in the U.S. and Australia with an Operations Center at the University of Alabama at Birmingham and a Data Center at Children’s Hospital of Philadelphia to coordinate consortium activities.
You can learn more about the NF Clinical Trial Consortium, find the Consortium Sites and current clinical trials. 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:
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:
Remember: The NF Registry will only contact you if you give specific permission. Your information is never used for fundraising.
