IQVIA Conducting Study for Individuals with NF1 and Plexiform Tumors

Author: IQVIA
Published On: 03/11/2021

The NF Network has been made aware of a new research study opportunity for individuals with NF1 and plexiform tumors. By participating, you will help researchers understand the complexity and pain associated with living with plexiform tumors, which may lead to new treatments. The study will be conducted through a telephone interview by IQVIA, a healthcare research firm. Limited spaces are available and interviews are currently being conducted. If you are interested in participating, please see the information IQVIA has provided below:

"IQVIA, a healthcare research firm, is currently conducting a research project with patients aged 18 years or older who have been diagnosed with neurofibromatosis type 1 (NF1) with plexiform neurofibromas and who are experiencing pain associated with their plexiform neurofibromas. The research will involve participating in a telephone interview lasting 75 to 90 minutes. In appreciation of your time, we are offering a $150 honorarium through Intercash (pre-paid debit card).

The research will focus on understanding your experiences with NF1 and plexiform neurofibromas, particularly the symptoms you have experienced over time and the impact those symptoms have on your daily life. Additionally, we would like your input on a questionnaire designed to evaluate pain associated with plexiform neurofibromas in patients with NF1. This research may help to improve how the patient experience is accounted for in clinical trials for new treatments.

The study is strictly for research purposes; there will be absolutely no sales or promotional activities.

If you are interested, please go to this link.

Please email Kim Kelly at if you have any questions. Many thanks in advance for your time and consideration!"

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