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 growth rates and clinical course of tumors associated with NF2. An international consortium of clinical centers and expertise in NF2 will be developed. We will standardize the volumetric analysis of intracranial and spinal tumors, and assess the patients' audiological, neurological, and ophthalmological functioning over the course of 3 years. Currently, 65 subjects are actively enrolled. Of the subjects that have had their exams, 91% of Year 1 audiological, 93% of cranial MRIs, 91% of spinal MRIs, 90% of neurological, 86% of ophthalmologic, 89% of SF-36 health surveys and 91% of physical functioning questionnaires have been received. Fifty-four percent of Year 2 audiological, 73% of cranial MRIs, 81% of spinal MRIs, 93% of neurological, 73% of ophthalmologic, 82% of SF-36 health surveys and 89% of physical functioning questionnaires have been received. Two foreign sites have experienced difficulty obtaining a Federal-wide assurance number and Army approval for subject enrollment. We have made good progress toward completion of the study's goals and anticipate few problems with the collection of Year 3 follow-up data.
Document Details
- Document Type
- Technical Report
- Publication Date
- Jan 01, 2004
- Accession Number
- ADA425862
Entities
People
- William Slattery
Organizations
- House Ear Institute