Thank you for your interest in this study. The purpose of the research is to explore your experiences with neurofibromatosis type 1 (NF1) with plexiform neurofibromas (tumors along the nerves, associated with NF1), particularly the symptoms you have experienced over time and the impacts those symptoms have on your daily life. We will first be asking you some questions to see if you are eligible to participate.  Patients who meet the research criteria will be asked to take part in a 75- to 90-minute telephone interview.

Any information you provide to us as part of the eligibility questions will be treated as confidential. It will be combined with feedback from others like yourself and will be stored in the United States on a secure server. Your information will be kept secure at all times. You will remain anonymous and your information will not be passed to any other organization without your permission.  Any Personal Data you give us as part of the eligibility questions will be deleted 5 years after study completion.  

This research is being conducted by IQVIA. IQVIA is privacy shield certified, which affirms adequate privacy protection is in place and aligns with requirements for the transfer of personal data outside of the European Union under the EU Data Protection Directive and outside of Switzerland under the Swiss Federal Act on Data Protection.

If you are eligible to take part in the 75- to 90-minute telephone interview you will be provided with a separate consent form to explain how the study works and your rights.

You have the right to withdraw at any time. For more information about your rights please see our privacy notice which is available at

If you have any questions, please contact Kim Kelly (
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