Clinical Trials Address Quality of Life for Persons with Neurofibromatosis (NF1, NF2, and Schwannomatosis) with Resiliency Training Delivered via Live Video
Posted May 19, 2020
Dr. Ana-Maria Vranceanu, Director, Integrated Brain Health Clinical and Research Program, Massachusetts General Hospital
Dr. Ana-Maria Vranceanu, Principal Investigator
Dr. Ethan Lester, Study Clinician for Adult Trial
Eric Riklin, MS, Study Clinician for Adolescent Trial
Mira Reichman, Study Coordinator
The Neurofibromatosis Research Program (NFRP) is focused on decreasing the clinical impact of neurofibromatosis Type 1 (NF1), NF2, and Schwannomatosis on persons with these disorders, their families, and caregivers. To help reach that goal, in fiscal year 2016 (FY16), the NFRP funded research aimed at increasing quality of life for persons with these disorders. Dr. Ana-Maria Vranceanu and her team at Massachusetts General Hospital have developed two stress and symptom management mind-body programs for adults with NF. Dr. Vranceanu is examining how each program may help improve physical health and psychological quality of life in patients with NF, as well as depression, anxiety, pain, and coping ability. Both treatments are delivered via secure videoconferencing, allowing easier access for patients and participation of geographically diverse persons with NF within the United States and around the world. While the study is still in progress, Dr. Vranceanu’s group has put together a video detailing the experiences of several of the trial participants and has published a paper sharing the details of the trial.
Recognizing that needs in various age groups can be quite different, Dr. Vranceanu sought and obtained funding in FY18 for a second study focused on delivering resiliency training to adolescents with NF1 and NF2. In this clinical trial, two programs, Resilient Youth for NF (RY-NF) and Health Education for NF (HE-NF), are being compared for improvements in quality of life, pain, and other psychosocial factors. These treatments are also being delivered via telemedicine and are tailored to the needs of these young participants using an age-appropriate format that delivers content such as dealing with bullying, improving self-confidence, and building communication skills.
Should the adult and adolescent resiliency programs demonstrate improvement in quality of life, Dr. Vranceanu plans to partner with NF foundations and clinics to implement their usage. Importantly, the telemedicine format allows these programs to be accessible to NF patients anywhere, including those who do not have easy contact with NF clinics. This may lighten the treatment burden for persons with NF1, NF2, and Schwannomatosis, as well as for their families, and caregivers. The NFRP is excited to see the results of both of these trials in the coming years!
Last updated Thursday, May 26, 2022