Study Needs 30 Minutes From People with Plexiform Tumors
Help researchers know what people with NF1- associated Plexiform Neurofibromas need!
If you or your child has NF1 and a plexiform neurofibroma please participate in a 30 minute online survey.
Survey for Adults The Adult Study is CLOSED/FILLED
The purpose of this study is to understand the health-related quality of life of individuals with NF-1 associated plexiform neurofibromas and to learn about their experiences. The results will be used to create a tool that can be used in clinical trials to prove that one type of treatment or another helps people with NF-1 associated plexiform neurofibromas.
Once you complete the survey you will get:
- A sense of satisfaction that you are advancing discovery for NF1
- $25 Visa Gift card*
- Plus another $25 will be donated in your name (or anonymously) to a new research fund that is a collaborative effort of NF patient advocacy groups that include Children’s Tumor Foundation and other NF organizations including NF Midwest.
People who can participate have to be:
- 18 years old or older or age 8-17 with parental permission
- Diagnosed with NF1 and a plexiform neurofibromas
- Fluent in English
Study links:
- Patients aged 18 and older can complete this survey at https://www.assessmentcenter.net/ac1/Assessments/pNF1_adultR
- For participants aged 8-17 (parents/guardians must complete clinical and demographic info) the study link is https://www.assessmentcenter.net/ac1/Assessments/pNF1_pedsR
Participation in this study is entirely voluntary and the decision is completely dependent on you. You may withdraw at any time.
Dr. Jin-Shei Lai in the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine is leading this study. If you have questions about this study please contact the study coordinator, Zabin Patel, at 312-503-3424 or .
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