Clinical Trial: Study of Plexiform Neurofibromas in Neurofibromatosis Type 1

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

Official Title: Natural History of Plexiform in Neurofibromatosis Type I

Brief Summary:

Background:

-Plexiform neurofibromas in patients with NF1 are a significant cause of morbidity but little is known about the natural history of these lesions.

Objectives:

  • The purpose of this study is to monitor the natural history of plexiform neurofibromas and to evaluate the usefulness of volumetric MRI tumor measurements in this disease.
  • Other goals of the study are to provide a body of normative data on the growth rate of plexiform neurofibromas and to establish a tissue repository and pathology review center to allow future studies of the pathogenesis of neurofibromas and clinical trials of potential therapeutic agents.

Design

- This study is coordinated by Dr. Bruce Korf, and was initiated when he was at the Partners Center for Human Genetics, Boston, MA.


Detailed Summary:

Background:

-Plexiform neurofibromas in patients with NF1 are a significant cause of morbidity but little is known about the natural history of these lesions.

Objectives:

  • The purpose of this study is to monitor the natural history of plexiform neurofibromas and to evaluate the usefulness of volumetric MRI tumor measurements in this disease.
  • Other goals of the study are to provide a body of normative data on the growth rate of plexiform neurofibromas and to establish a tissue repository and pathology review center to allow future studies of the pathogenesis of neurofibromas and clinical trials of potential therapeutic agents.

Design

- This study is coordinated by Dr. Bruce Korf, and was initiated when he was at the Partners Center for Human Genetics, Boston, MA.


Sponsor: National Cancer Institute (NCI)

Current Primary Outcome:

  • Monitor natural history of plexiform neurofibromas [ Time Frame: 3 years ]
  • Usefulness of volumetric MRI measurements [ Time Frame: 4 years ]


Original Primary Outcome:

Current Secondary Outcome:

  • Establish tissue repository & pathology reviews center [ Time Frame: 3 years ]
  • Body of data regarding growth rate of plexiform neurofibromas [ Time Frame: 3 years ]


Original Secondary Outcome:

Information By: National Institutes of Health Clinical Center (CC)

Dates:
Date Received: November 3, 2000
Date Started: October 26, 2000
Date Completion:
Last Updated: April 21, 2017
Last Verified: July 7, 2016