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Neurofibromatosis Type 1 Patient Registry — NPRI  

Neurofibromatosis Type 1 Clinical Trial

Official title:
Neurofibromatosis Type 1 Patient Registry

Clinical Trial 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/

Clinical Trial Description

n/a

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT01410006
Study type Observational [Patient Registry]
Source Washington University School of Medicine
Contact
Status Completed
Phase N/A
Start date May 2011
Completion date July 2017
View Details
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