MGH and Harvard Conducting Resilient Youth with NF Study
Author: Study Coordinator, Julie Brewer
Published On: 09/13/22
The Family Center for Neurofibromatosis and the Center for Health Outcomes and Interdisciplinary Research (CHOIR) at the Massachusetts General Hospital are conducting a research study to compare two programs that teach stress and symptom management skills for adolescents with NF1, NF2, or schwannomatosis.
The Department of Defense is paying for this study.
What does the study involve?
- 8 45-minute group sessions led by an MGH psychologist with expertise in NF.
- Completion of questionnaires on your own computer at the beginning, end, 6 months and 12 months after the sessions.
- All sessions will take place from your home, using Zoom, a secure software program you can use with a computer and a webcam to have live videoconferences, that we will help you install for free.
- This study DOES NOT involve taking medication.
- This study DOES NOT involve travel to MGH.
Who can participate?
- We are looking for adolescents ages 12-17 who have a diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis.
What are the benefits?
- If you participate in this research study, you will learn stress and symptom management skills that you can continue to use after the study. You will also interact with other adolescents with NF like yourself.
- There is no cost to participate in this study and your decision to participate will not affect your medical care.
How do I join?
- If you would like to learn more about this research study, please contact: Study Coordinator, Julie Brewer at firstname.lastname@example.org or Principal Investigator, Ana-Maria Vranceanu at email@example.com.
Julie and Ana-Maria thank you for considering their research study! You will be helping them gather important information about a training that may help other patients in the future.