Resiliency for NF Study – Looking for Participants
Are you feeling stressed?
Are your NF symptoms bothersome?
The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare 2 programs that teach stress and symptom management skills for adults with NF1, NF2, or schwannomatosis.
The Department of Defense is paying for this study.
What does the study involve?
- 8 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 Vidyo, a secure software program you can use with a computer and a webcam to have live video-conferences, that we will help you install for free.
- Sessions are 1.5 hours long and held once a week. This study DOES NOT involve taking medication. This study DOES NOT involve travel to MGH.
Who can participate?
- We are looking for people ages 18 and older 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 adults 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 the study coordinator, Christopher J. Funes,, or the principal investigator, Ana-Maria Vranceanu, .
Thank you for considering our research study! You will be helping us gather important information about a training that may help other patients in the future.
I am 70 years old and have struggled with the mental issues of having NF 1 for years
Bobbie, We’re sorry to hear of your struggles. At NF Midwest we all have a loved one affected by NF and are doing all we can. Where do you live?
I have struggled with self esteem because of the effects of having NF 1 for years. Can get very depressed at times. I am 70 years old
Would like to know more info please and thank you.
Dawn, you need to contact Chris Funes at . To learn more…you want me to give him your email.