Study of
Neurofibroma Growth in Neurofibromatosis Type 1
Douglas Stewart, M.D., a medical geneticist
at the National Institutes of Health, is investigating the growth of dermal
neurofibromas (skin tumors) in neurofibromatosis
type 1 (NF1). The study will include a one-day visit to the NIH Clinical Center
for a genetics evaluation, removal (biopsy) of a neurofibroma
(and a small piece of normal skin), conventional photography and a blood draw. We will also be taking detailed pictures of
the skin using two new special cameras. Participants
will be required to return to the NIH for half-day follow-up visits 3, 6,
12, 18 and 24 months after the first evaluation. Biopsy is performed only
at the first visit; the follow-up visits are for photography only.
Individuals age 20-50 years diagnosed with NF1 may be eligible to participate
in this study. Participants can either be the first member
of their family affected or have a family history of the disease. Parents and affected siblings will also be invited
to participate. All medical evaluations will be free of charge and funding
is available for travel expenses.
Jennifer Sloan,
Ph.D., M.S.
Protocol Coordinator &
Genetic Counselor
NHGRI/NIH
10 Center Dr. MSC 1205
Building 10, CRC, Room 3-2551
Bethesda, MD 20892
Phone: 301-451-9145