National 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 about NIAMS, call our information clearinghouse at 301-495-4484 or 877-22-NIAMS (free call) or visit the NIAMS Web site at http://www.nih.gov/niams.

To be placed on a list to receive information when registry enrollment begins, contact the center nearest you:

Madeleine Duvic, M.D. (principal investigator)
Kathleen Hunzicker, M.D. (clinical coordinator)
Joan Breuer-McHam, Ph.D. (data coordinator)
National Alopecia Areata Registry
University of Texas
M.D. Anderson Cancer Center
Department of Dermatology
Box 434, 1515 Holcombe Blvd.
Houston, Texas 77030
713-792-5999
713-794-1491 (fax)
[email protected]

David A. Norris, M.D. (co-principal investigator)
University of Colorado
Department of Dermatology
4200 E. Ninth Avenue-B144
Denver, CO 80262
303-315-7738
303-315-8272 (fax)
[email protected]

Vera H. Price, M.D. (collaborator)
University of California, San Francisco
Department of Dermatology
350 Parnassus Avenue
Suite 505
San Francisco, CA 94117
415-476-3638
415-502-7243 (fax)
[email protected]

Maria Hordinsky, M.D. (collaborator)
University of Minnesota
Department of Dermatology
420 Delaware St � SE
Minneapolis, MN 55455-0392
612-624-9947
612-624-6678 (fax)
[email protected]

Angela Christiano, Ph.D. (collaborator)
Cheryl Moore (administrative assistant to registry)
Columbia University
Department of Dermatology
630 West 168th St. � VC15
New York, NY 10032
212-305-9739
212-305-7391 (fax)
[email protected] (Christiano)
[email protected] (Moore)