The Study of Neurofibroma Growth in Adults with NF1

Overview: The Disease Severity Study Overview: The Tumor Growth Study General Information About NF1 FAQ About the Disease Severity Study FAQ About the Tumor Growth Study Diagnostic Criteria Online Resources for NF1 Study Updates Contact Information

Overview: The Study of Neurofibroma Growth in Adults with NF1

We invite you to join a research study of neurofibromatosis type 1 (NF1) in adults at the National Institutes of Health (NIH). We are trying to answer a simple question: In adults, how fast (or how slow) do skin neurofibromas grow? By answering this question, we hope to lay the groundwork for future trials of new drugs to control the growth of neurofibromas. We also hope to find genes that control the growth of neurofibromas in NF1.

With this study, we are trying to learn how fast or slow neurofibromas grow, and how often they appear. We also are looking for the genes that control the growth rate of the tumors. The results of this study may help us design future trials to test new drugs to treat the tumors. If we can find genes that control the growth rate of the tumors, we hope to use those genes to predict the approximate number of tumors a person with NF1 might have.

To find out more about The Study of Neurofibroma Growth in Adults with NF1 at the National Human Genome Research Institute (NHGRI), please explore the Study of Neurofibroma Growth in Adults web pages.

Brochure for the Study of Neurofibroma Growth in Adults with NF1

Douglas R. Stewart, M.D.
National Human Genome Research Institute
National Institutes of Health

Contact Information

Sarah Coombes, M.S., C.G.C.
Protocol Coordinator/Genetic Counselor
National Human Genome Research Institute
National Institutes of Health
Building 10, CRC 5-1485
10 Center Drive MSC 1449
Bethesda, MD 20892
Phone: (301) 451-9145
Fax: (301) 480-9454
E-mail: coombessl@mail.nih.gov

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Last Updated: April 6, 2009