Neurofibromatosis Type 1 Patient Registry

Completed

Conditions studied: Neurofibromatosis Type 1

In brief

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/

Key facts

Study ID

NCT01410006

Run by

Washington University School of Medicine

People needed

2391

Starts

2011-05-01

Expected to finish

2017-07-01

Last updated by the study team

2017-07-25

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

You may not qualify if…

• Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1

Where it is running

• Washington University — St Louis, Missouri, United States

Full record on ClinicalTrials.gov

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