Neurofibromatosis Type 1 Patient Registry (NPRI)

This study is currently recruiting participants. (see Contacts and Locations)
Verified December 2015 by Washington University School of Medicine
Information provided by (Responsible Party):
Washington University School of Medicine Identifier:
First received: August 2, 2011
Last updated: December 7, 2015
Last verified: December 2015

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

Neurofibromatosis Type 1

Study Type: Observational [Patient Registry]
Target Follow-Up Duration: 50 Years
Official Title: Neurofibromatosis Type 1 Patient Registry

Resource links provided by NLM:

Further study details as provided by Washington University School of Medicine:

Primary Outcome Measures:
  • Neurofibromatosis Type 1 [ Time Frame: ongoing ] [ Designated as safety issue: No ]

Estimated Enrollment: 5000
Study Start Date: May 2011
Estimated Primary Completion Date: December 2040 (Final data collection date for primary outcome measure)

Genders Eligible for Study:   Both
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
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01410006

Contact: Kimberly J Johnson, MPH, PhD 314-935-9154

United States, Missouri
Washington University Recruiting
St. Louis, Missouri, United States, 63130
Contact: Kimberly J Johnson, PhD    314-935-9154   
Sponsors and Collaborators
Washington University School of Medicine
Study Director: Kimberly J Johnson, PhD Washington University School of Medicine
  More Information

Additional Information:
Responsible Party: Washington University School of Medicine Identifier: NCT01410006     History of Changes
Other Study ID Numbers: 10-1036 
Study First Received: August 2, 2011
Last Updated: December 7, 2015
Health Authority: United States: Institutional Review Board

Keywords provided by Washington University School of Medicine:

Additional relevant MeSH terms:
Neurofibromatosis 1
Genetic Diseases, Inborn
Heredodegenerative Disorders, Nervous System
Neoplasms by Histologic Type
Neoplasms, Nerve Tissue
Neoplastic Syndromes, Hereditary
Nerve Sheath Neoplasms
Nervous System Diseases
Nervous System Neoplasms
Neurocutaneous Syndromes
Neurodegenerative Diseases
Neuromuscular Diseases
Peripheral Nervous System Diseases
Peripheral Nervous System Neoplasms processed this record on May 23, 2016