Trials / Completed
CompletedNCT01410006
Neurofibromatosis Type 1 Patient Registry
- Status
- Completed
- Phase
- —
- Study type
- Observational
- Enrollment
- 2,391 (actual)
- Sponsor
- Washington University School of Medicine · Academic / Other
- Sex
- All
- Age
- —
- Healthy volunteers
- Accepted
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/
Conditions
Timeline
- Start date
- 2011-05-01
- Primary completion
- 2017-07-01
- Completion
- 2017-07-01
- First posted
- 2011-08-04
- Last updated
- 2017-07-25
Locations
1 site across 1 country: United States
Source: ClinicalTrials.gov record NCT01410006. Inclusion in this directory is not an endorsement.