Clinical Trial: Neurofibromatosis Type 1 Patient Registry

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]

Official Title: Neurofibromatosis Type 1 Patient Registry

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 Summary:
Sponsor: Washington University School of Medicine

Current Primary Outcome: Neurofibromatosis Type 1 [ Time Frame: ongoing ]

Original Primary Outcome:

Current Secondary Outcome:

Original Secondary Outcome:

Information By: Washington University School of Medicine

Dates:
Date Received: August 2, 2011
Date Started: May 2011
Date Completion: December 2040
Last Updated: October 31, 2016
Last Verified: October 2016