Celebrating 41 Years

Participants Needed for NF1 Study on Coping with Pain

 Coping with Pain: an ACTive Approach


  • Do you have NF1 and one or more plexiform neurofibromas?
  • Do you have pain that has lasted three months or more?
  • Are you between the ages of 16 and 34 years?

If you answered yes to all these questions, you may be eligible for a new study at the National Cancer Institute in Bethesda, Maryland.

The study is evaluating an intervention called Acceptance and Commitment Training, or ACT, which has been found effective in other medical populations for decreasing how much pain interferes with daily life.  For this study, people will be asked to come to the NIH for a 2-day visit.  During this visit, they will fill out some questionnaires that ask about things like pain severity and emotional well-being. They also will get an electrocardiogram (ECG), which is a painless procedure that monitors heart rate. Next, we will randomly select (like flipping a coin) half of the people to do the ACT training right away. The other half will be put on a wait list for about two months, and then return to the NIH to do the training.

There are three parts to the training.  First, you will participate in two 2-hour sessions with an ACT trainer at the NIH during which you will learn new ways of coping with pain.  Second, you will receive weekly emails for 8 weeks, each about ways you can work on ACT techniques at home.  Third, you will have three video chat sessions (such as Skype, done on your home computer at week 2, week 4, and week 6) with your ACT trainer.

At the end of the 8-week training, we will ask everyone to return to the NIH to complete questionnaires again and get another ECG.  Three months later, we will ask you to complete the questionnaires one last time from your home computer.

Individuals ages 16 and 17 years must have a parent or guardian give permission for their participation.

The NIH will offer some reimbursement for travel and expenses for people who live more than 50 miles away. Also, everyone will receive a small amount of money to thank you for your time each time you come to the NIH and when you complete the follow-up questionnaires from home.

To learn more about the study, please contact Dr. Staci Martin or Dr. Taryn Allen at 301-496-0561, or email or .



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