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Neurofibromatosis Type 1 Patient Registry (NPRI)

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ClinicalTrials.gov Identifier: NCT01410006
Recruitment Status : Completed
First Posted : August 4, 2011
Last Update Posted : July 25, 2017
Information provided by (Responsible Party):

Study Description
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/

Condition or disease
Neurofibromatosis Type 1

Study Design

Study Type : Observational [Patient Registry]
Actual Enrollment : 2391 participants
Observational Model: Other
Time Perspective: Other
Target Follow-Up Duration: 50 Years
Official Title: Neurofibromatosis Type 1 Patient Registry
Study Start Date : May 2011
Primary Completion Date : July 2017
Study Completion Date : July 2017

Groups and Cohorts

Outcome Measures

Primary Outcome Measures :
  1. Neurofibromatosis Type 1 [ Time Frame: ongoing ]

Eligibility Criteria

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
The study population is all individuals diagnosed with Neurofibromatosis Type 1.

Inclusion Criteria:

  • Individuals diagnosed by a healthcare provider with Neurofibromatosis Type 1

Exclusion Criteria:

  • Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1
Contacts and Locations

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01410006

United States, Missouri
Washington University
Saint Louis, Missouri, United States, 63130
Sponsors and Collaborators
Washington University School of Medicine
Study Director: Kimberly J Johnson, PhD Washington University School of Medicine
More Information

Responsible Party: Washington University School of Medicine
ClinicalTrials.gov Identifier: NCT01410006     History of Changes
Other Study ID Numbers: 10-1036
First Posted: August 4, 2011    Key Record Dates
Last Update Posted: July 25, 2017
Last Verified: July 2017

Keywords provided by Washington University School of Medicine:

Additional relevant MeSH terms:
Neurofibromatosis 1
Nerve Sheath Neoplasms
Neoplasms, Nerve Tissue
Neoplasms by Histologic Type
Neoplastic Syndromes, Hereditary
Neurocutaneous Syndromes
Nervous System Diseases
Heredodegenerative Disorders, Nervous System
Neurodegenerative Diseases
Genetic Diseases, Inborn
Peripheral Nervous System Neoplasms
Nervous System Neoplasms
Peripheral Nervous System Diseases
Neuromuscular Diseases