Protocol Number: 01-C-0027

Title:

Natural History of Plexiform Neurofibromatosis Type I

Number:

01-C-0027

Summary:

The purpose of this study is to document the rate of growth of plexiform neurofibromas over a 3-year period. Plexiform neurofibromas are a type of benign tumor seen in patients with neurofibromatosis type 1. The growth of these tumors is unpredictable and the factors that influence their growth are largely unknown.

Children and adults with plexiform neurofibromas may be eligible for this study. At the first clinic visit a blood sample of about 5 to 10 milliliters (1 to 2 teaspoons) will be drawn. DNA from the sample will be stored for possible future study of changes in the NF1 gene or other genes that may affect the behavior of neurofibromas. The serum may be used to test for substances in the blood that cause neurofibromas to grow.

Every 6 months patients will have a standard physical examination. In addition, if the plexiform neurofibroma is visible on the skin surface, it will be measured with a tape measure or ruler and photographed. Photographs will include only the part of the body affected by the neurofibroma, and they will be kept in a confidential file without any patient identifier.

Patients will have magnetic resonance imaging (MRI) scanning of the plexiform neurofibroma three times during the study-at enrollment, at 1 year and at 3 years. Scans will be done more often if the plexiform neurofibroma appears to be growing rapidly or if other problems are noted.

Surgery will not be done as part of this study. If, however, surgery is performed as part of standard medical care and tumor tissue is available that is not needed for clinical purposes, a sample will be stored for possible distribution to investigators conducting research on neurofibromatosis.

Patients who do not wish to contribute a blood and/or tumor sample, may still participate in the study.

Sponsoring Institute:

National Cancer Institute (NCI)

Recruitment Detail

Type: Follow-up Of Previously Enrolled Subjects Only

Gender: Male & Female

Referral Letter Required: Yes

Population Exclusion(s): None

Eligibility Criteria: This study is not currently recruiting new subjects. If you have questions about participating in a study, please contact the Patient Recruitment and Public Liaison Office, CC.

Special Instructions: Currently Not Provided

Disease Category:

PROTICD

Keywords:

MRI Volumetric Analysis

Central Tissue Bank

Tumor Progression

Recruitment Keywords:

None

Conditions:

Neurofibroma, Plexiform

Neurofibromatosis Type I

Investigational Drug(s):

None

Investigational Device(s):

None

Contacts:

This study is not currently recruiting new subjects. If you have questions about participating in a study, please contact the Patient Recruitment and Public Liaison Office, CC.

Citations: Not Provided

• Questions about participating in a study, please contact the Patient Recruitment and Public Liaison Office, CC.
• Technical questions regarding the Clinical Center web site, please contact the Department of Networks and Applications, CC.

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Warren Grant Magnuson Clinical Center (CC)
National Institutes of Health (NIH)
Bethesda, Maryland 20892. Last update: 10/27/2004