Neurofibromatosis Type 1 Patient Registry (NF1 registry)

This study is currently recruiting participants. (see Contacts and Locations)
Verified November 2013 by Washington University School of Medicine
Sponsor:
Information provided by (Responsible Party):
Washington University School of Medicine
ClinicalTrials.gov Identifier:
NCT01410006
First received: August 2, 2011
Last updated: November 25, 2013
Last verified: November 2013
  Purpose

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. Please note: there is no therapy associated with this study. Individuals may participate in the registry by going to https://nf1registry.wustl.edu/


Condition
Neurofibromatosis Type 1

Study Type: Observational
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)
  Eligibility

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.

Criteria

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 ClinicalTrials.gov identifier: NCT01410006

Contacts
Contact: Nancy L Mueller, MPH 314- 935-3888 nf1registry@brownschool.wustl.edu

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

Additional Information:
No publications provided

Responsible Party: Washington University School of Medicine
ClinicalTrials.gov Identifier: NCT01410006     History of Changes
Other Study ID Numbers: 10-1036
Study First Received: August 2, 2011
Last Updated: November 25, 2013
Health Authority: United States: Institutional Review Board

Keywords provided by Washington University School of Medicine:
NF1
neurofibromatosis
NF

Additional relevant MeSH terms:
Neurofibromatoses
Neurofibromatosis 1
Osteitis Fibrosa Cystica
Neurofibroma
Nerve Sheath Neoplasms
Neoplasms, Nerve Tissue
Neoplasms by Histologic Type
Neoplasms
Neoplastic Syndromes, Hereditary
Neurocutaneous Syndromes
Nervous System Diseases
Heredodegenerative Disorders, Nervous System
Neurodegenerative Diseases
Genetic Diseases, Inborn
Peripheral Nervous System Diseases
Neuromuscular Diseases
Bone Diseases, Endocrine
Bone Diseases
Musculoskeletal Diseases

ClinicalTrials.gov processed this record on July 23, 2014