Neurofibromatosis Type 1 Patient Registry
| Status: | Recruiting |
|---|---|
| Conditions: | Cancer, Other Indications |
| Therapuetic Areas: | Oncology, Other |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 4/21/2016 |
| Start Date: | May 2011 |
| Contact: | Kimberly J Johnson, MPH, PhD |
| Email: | nf1registry@brownschool.wustl.edu |
| Phone: | 314-935-9154 |
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/
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/
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
site
1 Brookings Drive
St. Louis, Missouri 63110
St. Louis, Missouri 63110
(314) 935-5000
Phone: 314-935-9154
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