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) alopeciaregistry@mdanderson.org

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) david.norris@uchsc.edu

Vera H. Price, M.D. (collaborator) University of California, San Francisco Department of Dermatology350 Parnassus Avenue Suite 505 San Francisco, CA 94117 415-476-3638 415-502-7243 (fax) hair@orca.ucsf.edu

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) hordi001@maroon.tc.umn.edu

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) amc65@columbia.edu (Christiano) cdm75@columbia.edu (Moore)