NF2 Natural History Consortium

The recruitment status of this study is unknown because the information has not been verified recently.
Verified September 2005 by Office of Rare Diseases (ORD).
Recruitment status was  Active, not recruiting
Information provided by:
Office of Rare Diseases (ORD) Identifier:
First received: October 18, 1999
Last updated: September 27, 2005
Last verified: September 2005


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

Schwannoma, Vestibular
Neurofibromatosis 2

Study Type: Observational
Study Design: Observational Model: Natural History
Time Perspective: Longitudinal

Resource links provided by NLM:

Further study details as provided by Office of Rare Diseases (ORD):

Estimated Enrollment: 100
Study Start Date: January 2002
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.

Ages Eligible for Study:   5 Years and older
Genders Eligible for Study:   Both
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
  Contacts and Locations
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Please refer to this study by its identifier: NCT00004483

United States, California
House Ear Institute
Los Angeles, California, United States, 90057-9927
Sponsors and Collaborators
House Ear Institute
Study Chair: William H. Slattery, III House Ear Institute
  More Information

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. Identifier: NCT00004483     History of Changes
Other Study ID Numbers: 199/14226  HEI-NF2  HEI-DAMD17-01-1-0710 
Study First Received: October 18, 1999
Last Updated: September 27, 2005
Health Authority: Unspecified

Additional relevant MeSH terms:
Neurofibromatosis 2
Neuroma, Acoustic
Central Nervous System Neoplasms
Cranial Nerve Diseases
Cranial Nerve Neoplasms
Ear Diseases
Genetic Diseases, Inborn
Heredodegenerative Disorders, Nervous System
Meningeal Neoplasms
Neoplasms by Histologic Type
Neoplasms by Site
Neoplasms, Germ Cell and Embryonal
Neoplasms, Nerve Tissue
Neoplasms, Vascular Tissue
Neoplastic Syndromes, Hereditary
Nerve Sheath Neoplasms
Nervous System Diseases
Nervous System Neoplasms
Neurocutaneous Syndromes
Neurodegenerative Diseases
Neuroectodermal Tumors
Neuroendocrine Tumors
Neuromuscular Diseases
Otorhinolaryngologic Diseases processed this record on May 26, 2016