Working… Menu

NF2 Natural History Consortium

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT00004483
Recruitment Status : Unknown
Verified September 2005 by Office of Rare Diseases (ORD).
Recruitment status was:  Active, not recruiting
First Posted : October 19, 1999
Last Update Posted : September 29, 2005
Information provided by:
Office of Rare Diseases (ORD)

Brief Summary:


I. Define the growth rates and clinical course of NF2-related tumors in patients with neurofibromatosis type 2. Associate growth rate with physical function.

Condition or disease
Schwannoma, Vestibular Neurofibromatosis 2 Meningioma

Detailed Description:
PROTOCOL OUTLINE: Data on the clinical course and growth rate of NF2-related tumors in patients with neurofibromatosis 2. Patients are evaluated each year on a cranial and a spinal MRI, eye tests, hearing tests, quality of life, neurological tests, and physical functioning.

Layout table for study information
Study Type : Observational
Enrollment : 100 participants
Observational Model: Natural History
Time Perspective: Longitudinal
Study Start Date : January 2002

Information from the National Library of Medicine

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, Learn About Clinical Studies.

Layout table for eligibility information
Ages Eligible for Study:   5 Years and older   (Child, Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No


--Disease Characteristics--

  • Diagnosed with neurofibromatosis 2 on or after 01/01/93
  • Must meet one of the following conditions:

Bilateral vestibular schwannoma OR Family history of neurofibromatosis 2 (first degree family relative) AND Unilateral vestibular schwannoma at under 30 years OR Any 2 of the following: Meningioma Glioma Schwannoma Juvenile posterior subcapsular lenticular opacity/juvenile cortical cataract

  • No plans to treat vestibular schwannoma in next 12 months

--Prior/Concurrent Therapy--

  • Not specified

--Patient Characteristics--

  • Age: 5 and over

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT00004483

Layout table for location information
United States, California
House Ear Institute
Los Angeles, California, United States, 90057-9927
Sponsors and Collaborators
House Ear Institute
Layout table for investigator information
Study Chair: William H. Slattery, III House Ear Institute

Masuda, Ann. Slattery, William H. III, Fisher, Laurel M., Oppenheimer, Mark. Audiological Characteristics of Initial Presentation of NF2 Patients: Preliminary Results. Abstract submitted to: Combined Otolaryngological Spring Meetings (COSM).
Fisher, Laurel M., Slattery, WIlliam H. III, Yoon, Gloria. MRI Test-Retest Study of NF2 Patients. Abstract Submitted to: Combined Otolaryngological Spring Meetings (COSM).
Slattery, William H. III, Fisher, Laurel M. Considerations in the Development of the NF2 Natural History Consortium. Submitted to Otolaryngology-Head and Neck Surgery.
Slattery, W.H., Fisher, L.M., Iqbal, Z., & Oppenheimer, M., Lev, MH., NF2 Study Group. (2004). Vestibular Schwannoma Growth Rates in NF2 Natural History Consortium Patients. Otolaryngology-Head and Neck Surgery. In Press.
Masuda, A., Fisher, LM, Oppenheimer, ML, Iqbal, Z., Slattery, WH., NF2 Study Group. (2004) Hearing Changes After Diagnosis in Neurofibromatosis 2 (NF2). Otolaryngology-Head and Neck Surgery. In press.
Zacharia, T., Lev, M., Iqbal, Z.T., Fisher ,L.M. , Gupta, MS, Slattery, WH. (2003) Intramedullary Spinal Tumors In NF II: Incidence And Imaging Characteristics American Radiology Society, 2003.

Layout table for additonal information Identifier: NCT00004483     History of Changes
Other Study ID Numbers: 199/14226
First Posted: October 19, 1999    Key Record Dates
Last Update Posted: September 29, 2005
Last Verified: September 2005
Additional relevant MeSH terms:
Layout table for MeSH terms
Neurofibromatosis 2
Neuroma, Acoustic
Neoplasms, Nerve Tissue
Neoplasms by Histologic Type
Neoplasms, Vascular Tissue
Meningeal Neoplasms
Central Nervous System Neoplasms
Nervous System Neoplasms
Neoplasms by Site
Nervous System Diseases
Nerve Sheath Neoplasms
Neoplastic Syndromes, Hereditary
Neurocutaneous Syndromes
Heredodegenerative Disorders, Nervous System
Neurodegenerative Diseases
Genetic Diseases, Inborn
Peripheral Nervous System Neoplasms
Neuroendocrine Tumors
Neuroectodermal Tumors
Neoplasms, Germ Cell and Embryonal
Vestibulocochlear Nerve Diseases
Retrocochlear Diseases
Ear Diseases
Otorhinolaryngologic Diseases