Overview | Neurofibromatosis Type 1 | Neurofibromatosis Type 2 | Schwannomatosis | Multi-type Trials | Clinical Trials Consortium

Neurofibromatosis (NF) refers to a group of three genetically distinct disorders that have a spectrum of clinical manifestations. The disorders, NF1, NF2, and Schwannomatosis, can all lead to tumor growth. Other manifestations include learning deficits and cognitive disorders, skin conditions, visual impairments, nervous system disorders and neurological symptoms, vascular disease, musculoskeletal disorders, malignancies, hearing impairments, and chronic pain. Treatments for NF currently include surgery, radiation, and chemotherapy, but several clinical trials are underway to identify more treatment options.

The Congressionally Directed Medical Research Programs’ Neurofibromatosis Research Program (NFRP) is funding several efforts focused on finding better treatments through two main mechanisms, the Clinical Trial Award and the NF Clinical Trials Consortium. A summary of the trials funded to date are found in the tabs on this page.

NF1/NF2/Schwannomatosis Trials

Updated November 2020

NF180021: Resiliency Training in Adolescents with NF1 and NF2: A Randomized Controlled Trial via Secure Live Video to Improve Emotional, Social, and Physical Health
Summary: This study is a randomized controlled trial for resiliency training targeted at adolescents with Neurofibromatosis 1 and Neurofibromatosis 2. The objective is to determine the efficacy two stress and symptom management programs, Resilient Youth for NF (RY-NF) and Health Education for NF (HE-NF), for improving Quality of Life, pain, and other psychosocial factors. The programs will be administered via secure live video.
Status: Recruiting Identifier: NCT03873610

NF160027: Resiliency Training for Adults with NF1, NF2, and Schwannomatosis: A Randomized Controlled Trial via Live Video
Summary: The goal of this study is to compare the efficacy of two stress and symptom management programs, a Relaxation Response Resiliency Program for patients with NF or a Health Enhancement Program for NF (HEP-NF), on physical health and psychological quality of life in NF patients. Both interventions will be delivered in groups via videoconferencing with Vidyo, a HIPPA approved, secure and easy to use video platform currently used in clinical practice.
Status: Recruiting Identifier: NCT03406208

Last updated Monday, January 3, 2022