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The Study of Disease Severity 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 Disease Severity 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 a family with NF1, why do some family members have more serious disease than others? By asking this question, we hope to find genes that control the seriousness (or severity) of NF1.

Neurofibromatosis type 1 is a genetic disease that causes changes in the growth of nerves, skin and bones. It is found in about 1 in 3500 people. Both males and females can get NF1, it affects people of all races and ethnicities and the disease usually starts in childhood.

To find out more about the Neurofibromatosis Type 1 study at the National Human Genome Research Institute (NHGRI), please explore the Neurofibromatosis Type 1 Study Web pages.

Brochure for the Study of Disease Severity in Adults with NF1

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

Contact Information

Jennifer Sloan, Ph.D., M.S.
Protocol Coordinator & Genetic Counselor
National Human Genome Research Institute
National Institutes of Health
10 Center Dr. MSC 1205 Building 10, CRC, Room 3-2551
Bethesda, MD 20892
Phone: (301) 451-9145
Fax: (301) 496-7157
E-mail: jsloan@mail.nih.gov

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Last Reviewed: June, 19, 2008