Neurofibromatosis Type 1 Patient Registry

NCT ID: NCT01410006

Last Updated: 2017-07-25

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

2391 participants

Study Classification

OBSERVATIONAL

Study Start Date

2011-05-31

Study Completion Date

2017-07-31

Brief Summary

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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

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Conditions

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Neurofibromatosis Type 1

Study Design

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Observational Model Type

OTHER

Study Time Perspective

OTHER

Eligibility Criteria

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Inclusion Criteria

* Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

Exclusion Criteria

* Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1
Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Washington University School of Medicine

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Kimberly J Johnson, PhD

Role: STUDY_DIRECTOR

Washington University School of Medicine

Locations

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Washington University

St Louis, Missouri, United States

Site Status

Countries

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United States

Other Identifiers

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10-1036

Identifier Type: -

Identifier Source: org_study_id

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