Research

The Tumor Foundation of BC has been funding research since 1994 when we provided our first grant to the NF Clinical Database at the University of British Columbia.

Since that time the Foundation has provided numerous stimulus grants to both new and established researchers delving deeper into the genetics of NF.

Here are a few ways you can get involved in research and help to change the future.

  • Join the NF Registry
  • Research the various clinical trials for neurofibromatosis or schwannomatosis.
  • Tell your doctor that you are interested in learning more about clinical trials or research studies.
  • Watch for opportunities that may be listed on this site or on social media.
  • Make a donation to support research
Resiliency for NF Study - Looking for Participants

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?

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.

Why should I participate in research?

  • Participation in research advances our understanding of neurofibromatosis and schwannomatosis to better understand the progression of the disorder
  • Research leads to better treatments and hopefully one day soon, a cure.
  • Enrolling in a study might give you or your child a chance to see extra doctors or find out more facts about you or your child’s condition.
  • A clinical study may offer closer monitoring or additional testing for you or your child, which may not be part of regular care.

The clinical trial links below are for informational purposes only.  The Tumour Foundation cannot recommend or advise patients about clinical trials. Please consult your physician for guidance.

Health Canada Database

https://health-products.canada.ca/ctdb-bdec/index-eng.jsp

US Clinical Trials

https://clinicaltrials.gov

World Health Organization

http://apps.who.int/trialsearch/default.aspx

Canadian Cancer Trials

http://www.canadiancancertrials.ca

NF Center (US) Clinical Trials

https://nfcenter.wustl.edu/patient-care/participate-in-research/current-clinical-trials/