Participating in research is one of the most powerful ways you can help change the future for everyone affected by neurofibromatosis and schwannomatosis. There are many ways to get involved, from sharing your experience to participating in a clinical trial. Every contribution, big or small, helps move us closer to better treatments and a cure.

Why Your Participation Matters

When you participate in research, you’re not just helping scientists—you’re gaining access to specialized care, learning more about your own condition, and joining a community of people dedicated to making a difference.

Advance Our Understanding

Research is the key to understanding NF better. Your involvement helps fuel the discovery of new treatments and brings us closer to a cure.

Access Expert Care

Some studies may offer closer monitoring or additional testing, like MRIs, at no cost, giving you access to extra care and expertise.

How to Find Research Opportunities

Finding a study that’s right for you is easier than you might think. Here are a few ways to get started:

  • Talk to your doctor: Let your NF specialist know you’re interested in research. They are often the best source for studies you may be eligible for. If you need help finding a specialist, you can find NF care in your area.
  • Explore online registries: Websites like clinicaltrials.gov and researchmatch.org are great resources for finding clinical trials for neurofibromatosis and schwannomatosis.
  • Stay connected with us: We share research opportunities through our email updates and social media. Sign up to stay informed about new studies and developments.

Highlighted Active Studies –
Look for more at ClinicalTrials.Gov

NOTE: We do not list drug trials here.

  • Evaluation of Acceptance and Commitment Training (ACT)
    Remote Research Study: Support for Caregivers of Children with RASopathies Offered by: NIH/National Cancer Institute, Bethesda MDConducted by: Dr. Staci Martin Peron A remote research study from the National Cancer Institute is evaluating Acceptance and Commitment Training (ACT), a method that has been effective in helping parents of individuals with other chronic conditions. The study…
  • Study on Tumor Visibility
    Offered by: NIH/National Cancer Institute, Bethesda MDConducted by: Dr. Staci Martin Peron You can help researchers better understand the experiences of people with NF1. The National Cancer Institute (NCI) is conducting a virtual study for individuals with visible plexiform or cutaneous neurofibromas, and you may be eligible to participate. About the Study The goal of…
  • The NF1 Cognitive Aging Project
    Participants 40+ May Earn $40. Florida State University College of Medicine is conducting a study to investigate cognitive patterns and predictors within middle-aged and older adults with NF1.
  • SMART-NF1 Project
    Parent’s May Earn $10. Kids 13-17 May Earn $210. Florida State University College of Medicine is conducting a study to improve understanding of cognitive, behavioral, and socioeconomic function in the daily lives of adolescents with NF1.
  • NF1 PN Pain Scale Research Study
    Offered by: National Institutes of Health (NCI)Conducted by: Dr. Pamela Wolters Recruiting for children (8-17) with NF1 and plexiform neurofibromas (pNFs) for a research study to complete pain questionnaires electronically over a two-week period from home. Pediatric participants must also have a parent/caregiver willing to complete questionnaires as part of the study. Please email the study coordinator,…
  • Johns Hopkins Various Clinical Trials
    Johns Hopkins Comprehensive NF Center Researchers at Johns Hopkins and around the world are investigating ways to slow the growth of NF-related tumors and prevent them from forming altogether. Although there is not yet a cure for either neurofibromatosis or schwannomatosis, some patients may benefit from clinical trials. Follow the link to learn more about the various…
  • NF1 Optic Pathway Gliomas Study
    Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients. Stanford Ophthalmology, Children’s Hospital of Philadelphia and Gilbert Family Foundation | 2024 This study is seeking to learn how different eye tests and devices can help understand vision in patients with NF1, including how vision loss might show up on different…

Be Part of the Next Breakthrough

Your involvement can make all the difference. Join our community to stay informed about the latest research news and opportunities to participate.

Get Involved