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NCT01410006 Clinical Trial

Neurofibromatosis Type 1 Patient Registry

Neurofibromatosis Type 1 Clinical Trial

— NPRI  

Official title:
Neurofibromatosis Type 1 Patient Registry

Clinical Trial Details — Status: Completed

Administrative data
NCT number NCT01410006
Other study ID # 10-1036
Secondary ID
Status Completed
Phase N/A
First received August 2, 2011
Last updated July 21, 2017
Start date May 2011
Est. completion date July 2017

Study information
Verified date July 2017
Source Washington University School of Medicine
Contact n/a
Is FDA regulated No
Health authority
Study type Observational [Patient Registry]

Clinical Trial 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/

Recruitment information / eligibility
Status Completed
Enrollment 2391
Est. completion date July 2017
Est. primary completion date July 2017
Accepts healthy volunteers Accepts Healthy Volunteers
Gender All
Age group N/A and older
Eligibility Inclusion Criteria:

- Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

Exclusion Criteria:

- Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1

Study Design

Related Conditions & MeSH terms

Locations
Country Name City State
United States Washington University Saint Louis Missouri

Sponsors (1)
Lead Sponsor Collaborator
Washington University School of Medicine

Country where clinical trial is conducted

United States, 

Outcome
Type Measure Description Time frame Safety issue
Primary Neurofibromatosis Type 1 ongoing
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Recruiting NCT05388370 - PASS of Paediatric Patients Initiating Selumetinib
Recruiting NCT02777775 - Targeting the Mechanisms Underlying Cutaneous Neurofibroma Formation in NF1: A Clinical Translational Approach.
Completed NCT02944032 - Efficacy of Computerized Cognitive Training and Stimulant Medication in Neurofibromatosis Type 1 N/A
Completed NCT01851135 - Neuropsychological Impairment and Quality of Life in Neurofibromatosis Type 1 N/A
Active, not recruiting NCT00326872 - AZD2171 in Treating Patients With Neurofibromatosis Type 1 and Plexiform Neurofibroma and/or Neurofibroma Near the Spine Phase 2

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