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Brief Title: Neurofibromatosis Type 1 Patient Registry
Official Title: Neurofibromatosis Type 1 Patient Registry
Study ID: NCT01410006
Brief Summary: The Neurofibromatosis Type 1 (NF1) Patient Registry Initiative (NPRI) is a web-based registry that asks participants to fill out a 30-minute online questionnaire to collect information about the spectrum of medical and social problems experienced by children and adults with NF1. The information gained from your participation may one day help doctors develop personalized treatments for individuals living with NF1. We are currently enrolling individuals with NF1 who either (1) HAVE previously been diagnosed with a brain tumor younger than 18 years or (2) HAVE NEVER had a brain tumor. Please note: there is no therapy associated with this study. Individuals may participate in the registry by going to https://nf1registry.wustl.edu/
Detailed Description:
Minimum Age:
Eligible Ages: CHILD, ADULT, OLDER_ADULT
Sex: ALL
Healthy Volunteers: Yes
Washington University, Saint Louis, Missouri, United States
Name: Kimberly J Johnson, PhD
Affiliation: Washington University School of Medicine
Role: STUDY_DIRECTOR