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Natural History Study of Neurofibromatosis Type 2

This is an observational study looking at Neurofibromatosis Type 2 (NF2), a genetic condition that causes tumors to grow on nerves. The study aims to understand how these tumors develop and how NF2 affects the nervous system over time. Researchers will follow 269 participants, aged 8 to 75, who have a diagnosis of NF2. You will have physical and neurological exams, MRI scans of your brain and spine, and blood tests. If you have measurable hearing, you will also have hearing tests. The main goal is to track the natural course of nervous system tumors in NF2 for up to 10 years.

Study design
This is an observational study involving 269 participants with Neurofibromatosis Type 2. It is not testing a specific treatment, but rather observing the condition over time.
What's involved
You will have an initial outpatient evaluation including physical and neurological exams, MRI scans, and blood collection. You will then have annual clinical and radiologic evaluations for up to 10 years, and annual auditory testing if you have measurable hearing.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for up to 10 years with annual evaluations.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT00598351

Natural History Study of Patients With Neurofibromatosis Type 2

Recruiting
Not specifiedAges 8–75Observational
National Institute of Neurological Disorders and Stroke (NINDS)
~269 participants
Updated 2026-08-28 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
To determine the natural history (clinical and radiographic) of nervous system tumors in NF2
Measured over annual for up to 10 years

Conditions

Neurofibromatosis

Explore related trials

EpendymomaMeningiomaNeurofibromatosisSchwannomaSpinal Cord NeoplasmVestibular Schwannoma

Where it's being run

1 sites across 1 states
Maryland1

Study leadership

  • Prashant Chittiboina, M.D. · PRINCIPAL_INVESTIGATOR · National Institute of Neurological Disorders and Stroke (NINDS)

Who to contact

Christina P Hayes, C.R.N.P.
[email protected]
(301) 496-2921
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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Have the diagnosis of NF2 by established clinical criteria or genetic testing.
Be between the age of 8 and 75.
Have the capacity to undergo serial MRI scanning of the CNS without IV sedation.
Able to give informed consent, or have a parent able to provide informed consent if a child.

Exclusion

Have a clinically unstable condition that precludes serial clinical and imaging evaluation (i.e. Class 3 congestive heart failure, severe chronic renal insufficiency, severe chronic obstructive pulmonary disease).
Cannot have an MRI scan due to an allergy or relative contraindication to MRI contrast agents, prior surgery or implant that involves metal clips or wires, which might be expected to cause tissue damage or produce image artifacts such as pacemakers, stimulators, pumps, aneurysm clips, metallic prostheses, and artificial heart valves.
ABIs or cochlear implants are not approved by the NIH Radiology department for safe use on NIH scanners..
Have severe chronic renal insufficiency (glomerular filtration rate less than 30 mL/min/1.73 m2), hepatorenal syndrome or post-liver transplantation.
Are pregnant at time of intake visit (women of childbearing age will be tested with a urine pregnancy test).

What this trial measures

  • To determine the natural history (clinical and radiographic) of nervous system tumors in NF2annual for up to 10 years

    Clinical Variables (longitudinal: measured annually for each subject)a. Subjective speech and swallowing dysfunction (binary)b. Spinal cord function:Modified ASIA Motor Scalec. Ambulatory status:modified McCormick grading scaled. Overall function:Karnofsky Performance Statuse. NFTI-QOLf. Functional Independence Measure scale MRI Variables (longitudinal: measured annually for each subject):a. Tumor volume (continuous variable) for VS tumors, meningiomas, other schwannomas, ependymomas, and Total tumor burden (number and volume). Specific growth rates of tumors.b. FLAIR hyper-intensity MRI Variables (cross-sectional: measured at baseline and as needed for each subject):c. MRI of Right Upper and Lower Extremity Laboratory testing variables (longitudinal:measured annually for each subject):a. Audiometry Laboratory testing variables (cross-sectional:measured at baseline and as needed for each subject)b. EMG/NCV study valuesc. Vestibular testing Covariate variable:a. Ageb. Sex