Neurofibromatosis Type 1 Patient Registry

Completed

• Conditions: Neurofibromatosis Type 1

• Registration Number: NCT01410006
• Lead Sponsor: Washington University School of Medicine

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

Not available

Basic Information
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Recruitment & Eligibility
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Study & Design
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Trial Locations

Study Timeline

• Study Start: 2011-05
• Study First Submitted: 2011-08-02
• Study First Submitted QC: 2011-08-02
• Study First Posted: 2011-08-04
• Status Verified: 2017-07
• Primary Completion: 2017-07
• Study Completion: 2017-07
• Last Update Submitted: 2017-07-21
• Last Update Posted: 2017-07-25

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 2391

Inclusion Criteria

• Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

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Exclusion Criteria

• Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Neurofibromatosis Type 1	ongoing

Trial Locations

Locations (1)

Washington University; 🇺🇸 Saint Louis, Missouri, United States