An observational study in Neurofibromatosis Type 1, sponsored by Washington University School of Medicine. Completed at 1 site in United States. Per ClinicalTrials.gov, last updated 2017-07-25.
Sponsored by Washington University School of Medicine · Observational
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/
186 studies on the registry are indexed under Neurofibromatoses; 24 are open to participants now.
This study's enrollment of 2,391 is above the median of 78 across 56 observational studies indexed under Neurofibromatoses.
Browse Neurofibromatoses studies →Washington University School of Medicine is the lead sponsor of 1,765 studies on the registry; 271 are open to participants now.
Of its 324 completed or terminated interventional studies of FDA-regulated products, 212 (65%) have results posted.
Counted across the registry records on this site, refreshed daily.
The study population is all individuals diagnosed with Neurofibromatosis Type 1.
Exclusion Criteria:
Neurofibromatosis Type 1
Time frame: ongoing
This study is completed, as verified in Jul 2017. You cannot join it, but the record below documents what was studied.
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Washington University School of Medicine