registry established for alopecia areata
A national registry for alopecia areata, a disease whose hallmark
is unexplained hair loss, has been established by the National Institute
of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part
of the National Institutes of Health (NIH). The new registry will
be located at the University of Texas M.D. Anderson Cancer Center
in Houston, with affiliated centers at the University of Colorado,
the University of California San Francisco, the University of Minnesota
and Columbia University.
Registry scientists will seek out and classify medical and family
history data for patients with three major forms of alopecia areata:
alopecia areata (patchy scalp hair loss); alopecia totalis (100
percent scalp hair loss); and alopecia universalis (100 percent
scalp and 100 percent body hair loss). Families with multiple affected
members will be especially helpful to further research studies.
The project will offer a future central information source where
researchers can obtain statistical data associated with the disease.
A Web site is currently being developed for the registry.
The registry will serve as a liaison between affected families
and investigators interested in studying this disorder. Scientists
hope the registry will be useful in locating the gene or genes associated
with alopecia areata. It will also link patients with other researchers
studying the cause or treatment of this disease.
NIAMS Director Stephen I. Katz, M.D., Ph.D., said, "This national
registry should propel alopecia areata research significantly forward.
It will also offer patients and families themselves the opportunity
to make a tangible impact on the disorder."
Madeleine Duvic, M.D., of the M.D. Anderson Cancer Center, will
be the lead investigator for the registry. "The data that we
hope to generate can be put to good use with today's advanced genetic
techniques," she said. "I am happy that we'll be the repository
for research data and samples for research that can significantly
impact this patient population."
Alopecia areata is an autoimmune disease, one in which the body's
natural defense system attacks healthy cells. In alopecia areata,
the target of the attack is the hair follicle, and the result is
hair loss ranging from patchy baldness to complete loss of all scalp
and body hair. It affects both males and females of all races, and
often begins in childhood. There is no known permanent cure.
Patient enrollment for the registry is currently projected
to begin in fall 2001. The project is funded under NIH contract
N01-AR-0-2249. The National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS) is a component of the National Institutes
of Health. The mission of the NIAMS is to support research into
the causes, treatment and prevention of arthritis and musculoskeletal
and skin diseases; the training of basic and clinical scientists
to carry out this research; and the dissemination of information
on research progress in these diseases. For more information
NIAMS, call their information clearinghouse at (301) 495-4484
or (877) 22-NIAMS (free call) or visit the NIAMS