Neurofibromatosis Type 2 (NF2) Natural History Consortium

Abstract

Neurofibromatosis 2 (NF2) is an autosomal disorder characterized by the development of multiple tumors within the brain and spinal canal. The purpose of the study is to define the growth rates and clinical course of tumors associated with NF2-affected individuals. An international consortium of clinical centers and expertise in NF2 will be developed, further expanding the infrastructure developed in the Natural History of Vestibular Schwannomas in NF2 US Army grant. We will standardize the volumetric analysis of intracranial and spinal tumors, assess the patients audiological, neurological, and ophthalmological functioning, and analyze molecular and clinical features of the disease over the course of 4 years. Ninety-six subjects are enrolled in the study. Of the 96 subjects enrolled 26 have withdrawn. Of the subjects who have completed and have had the scans sent to WorldCare for analyzing for Year 1 84 (98%) cranial exams and 78 (91%) spinal exams have been received. Of the subjects who have completed the Year 2 exams, 74 (95%) cranial exams and 62 (79%) spinal exams have been sent. Of the subjects who have completed the Year 3 exams, 48 (91%) cranial exams and 40 (75%) spinal exams have been sent. Of the subjects who have completed the Year 4 exams, 23 (92%) cranial exams and 19 (76%) spinal exams have been sent. WorldCare has analyzed, and sent HEI 83 (99%) Year 1 Cranial MRI CRFs, 63 (85%) of the Year 2 Cranial MRI CRFs, 45 (94%) of the Year 3 Cranial MRI CRFs, 21 (91%) of the Year 4 Cranial MRI CRFs. WorldCare has analyzed, and sent HEI 76 (97%) of the Year 1 Spinal MRI CRFs, 46 (74%) of the Year 2 Spinal MRI CRFs and 33 (83%) of the Year 3 Spinal MRI CRFs, 14 (75%) of the Year 4 Spinal MRI CRFs.

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Document Details

Document Type
Technical Report
Publication Date
Jan 01, 2006
Accession Number
ADA457448

Entities

People

  • William H. Slattery

Organizations

  • House Ear Institute

Tags

DTIC Thesaurus Topics

  • Acquisition
  • Consortiums
  • Data Analysis
  • Data Management
  • Data Transmission
  • Databases
  • Diseases And Disorders
  • Health Services
  • Magnetic Resonance
  • Medical Personnel
  • Molecular Biology
  • Natural History
  • Neoplasms
  • Neurofibromatosis
  • New York
  • Quality Of Life
  • Volumetric Analysis

Fields of Study

  • Medicine

Readers

  • Clinical Trial Research.
  • Medical Imaging.
  • Neurological Diseases/Conditions/Disorders