Neurofibromatosis Type 1 Patient Registry

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01410006

Acronym

NPRI

Enrollment

2391

Registered

2011-08-04

Start date

2011-05-31

Completion date

2017-07-31

Last updated

2017-07-25

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Neurofibromatosis Type 1

Keywords

NF1, neurofibromatosis, NF

Brief 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/

Interventions

None listed

Study design

Observational model

OTHER

Time perspective

OTHER

Eligibility

Sex/Gender

ALL

Healthy volunteers

Yes

Inclusion criteria

* Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

Exclusion criteria

* Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1

Design outcomes

Primary

Measure	Time frame
Neurofibromatosis Type 1	ongoing

Countries

United States

Outcome results