Category: Active Studies

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…

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…

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.

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.

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 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…

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…