Neurofibromatosis Type 1 Patient Registry

Conditions:Cancer, Other Indications
Therapuetic Areas:Oncology, Other
Age Range:Any
Start Date:May 2011
Contact:Kimberly J Johnson, MPH, PhD

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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

Inclusion Criteria:

- Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

Exclusion Criteria:

- Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1
We found this trial at
1 Brookings Drive
St. Louis, Missouri 63110
 (314) 935-5000
Phone: 314-935-9154
Washington University Washington University creates an environment to encourage and support an ethos of wide-ranging...
St. Louis, MO
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