Completed

NPRINeurofibromatosis Type 1 Patient Registry

0 criteria met from your profileSee at a glance how your profile meets each eligibility criteria.
What is being collected

Data Collection

Who is being recruted

Congenital, Hereditary, and Neonatal Diseases and Abnormalities+13

+ Neoplasms

+ Neoplasms by Histologic Type

+2 Eligibility Criteria
See all eligibility criteria
How is the trial designed

Other

Utilizing specific methods not covered by standard models in order to address unique research questions.
Observational
Study Start: May 2011
See protocol details

Summary

Principal SponsorWashington University School of Medicine
Last updated: January 27, 2026
Sourced from a government-validated database.Claim as a partner

Study start date: May 1, 2011

Actual date on which the first participant was enrolled.

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/

Official TitleNeurofibromatosis Type 1 Patient Registry
NCT01410006
Principal SponsorWashington University School of Medicine
Last updated: January 27, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details

2391 patients to be enrolled

Total number of participants that the clinical trial aims to recruit.

Other

Some studies use unique or mixed approaches that don't fit standard categories. These may include innovative observational methods or studies tailored to specific research questions.

Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria

Any sex

Biological sex of participants that are eligible to enroll.

Healthy volunteers allowed

If individuals who are healthy and do not have the condition being studied can participate.

Conditions

Pathology

Congenital, Hereditary, and Neonatal Diseases and AbnormalitiesNeoplasmsNeoplasms by Histologic TypeNeoplasms, Nerve TissueNeoplastic Syndromes, HereditaryNervous System DiseasesNeurofibromaNeurofibromatosis 1Neuromuscular DiseasesPeripheral Nervous System DiseasesNeurofibromatosesNerve Sheath NeoplasmsNeurodegenerative DiseasesHeredodegenerative Disorders, Nervous SystemNeurocutaneous SyndromesGenetic Diseases, Inborn

Criteria

1 inclusion criteria required to participate
Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1
1 exclusion criteria prevent from participating
Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Study Objectives

Study Objectives

Primary Objectives

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.

This study has 1 location

Suspended

Washington University

St Louis, United StatesOpen Washington University in Google Maps
CompletedOne Study Center
NPRI | Neurofibromatosis Type 1 Patient Registry | PatLynk