Celebrating 35 Years

500 Participants Needed

New Survey for Adults Neurofibromatosis or Schwannomatosis

New Survey for Adults Neurofibromatosis or Schwannomatosis

Researchers are looking for adults with neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis to participate in an anonymous online survey to help  design psychosocial trials for adults with these disorders. They also have some important questions on how the current coronavirus pandemic is affecting you.

1. Are you an adult (18 years or older)?

2. Do you have neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), or schwannomatosis (SWN)?

3. Do you read and understand English?

If you answered yes to all 3 questions, your help is needed to better understand your views about the social and emotional concerns of adults with NF1, NF2, and SWN and your thoughts about designing psychosocial clinical trials to help with these concerns. Researchers hope to get at least 500 responses to this survey from all over the world.

Your participation will involve completing an online survey that will take approximately 35-50 minutes. Once you start, you must complete the survey in one sitting (you cannot save your answers and return to it). At this time, the survey is available only in English.

The study is completely voluntary, and you can withdraw at any time. There will be no cost for taking part in this study and you will not receive any payment for participation. For more information about the study and the survey, please click the link below.



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