National Institute of Arthritis and Musculoskeletal and Skin Diseases

For Immediate Release 
December 15, 1995 

Contact: Barbara Weldon 
Office of Scientific and 
Health Communications 
(301) 496-8190

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has established a lupus registry and repository to study not only patients but also their families in order to identify genes that determine susceptibility to the disease. The high prevalence of lupus among relatives of lupus patients suggests a genetic component for the disease. However, genetic studies of lupus to date have been incomplete.

"Our understanding of lupus and development of new treatments are sure to be aided by finding the genes that cause the disease," said Dr. Stephen I. Katz, Director of the NIAMS. "By providing an extensive source of medical information, the registry will serve as a valuable resource for researchers to advance genetic studies of this important disease," he said.

The Lupus Registry and Repository will be assembled and administered at the Oklahoma Medical Research Foundation in Oklahoma City, Oklahoma. The project will be directed by Dr. John Harley, Professor of Immunology at the University of Oklahoma Health Sciences Center and staff physician at the Oklahoma City Veterans Medical Center. They are seeking lupus patients who have two or more family members who have also been diagnosed with the disease. Patients, many of whom are minorities, will be recruited from clinics, private practices, and voluntary organizations. Families who qualify for the study will be sent a sample collection kit, a consent form and a questionnaire. A blood sample will be collected and the completed materials will be sent to Dr. Harley and his associates for evaluation.

Dr. Harley and his associates will collect and update clinical, demographic and laboratory data on all patients with lupus and their families for the Lupus Registry. They will store blood, cells and DNA from these individuals in the Lupus Repository. The researchers will also analyze each DNA sample in the repository for the presence of a standard set of genetic markers. A centralized database will provide this genetic information along with clinical and laboratory information from the registry. Together, these data can be used as the starting point for genetic analysis to identify possible lupus genes. Ultimately the repository will contain data on more than 125 fully characterized lupus families, and be available to other researchers.

Systemic lupus erythematosus (SLE, or lupus) is believed to result from an interplay of genetic, environmental, and hormonal factors. In lupus, the immune system is thrown out of balance and produces autoantibodies (antibodies that attack the patient's own tissues). The disease can affect many parts of the body, including the joints, skin, kidney, lungs, heart, nervous system, and blood vessels. It is characterized by period of flares and remissions--that is, periods when disease symptoms either worsen or improve. Ninety percent of lupus patients are women, and the disease most often strikes during the childbearing years. In addition, lupus is three times more common in black women than in white women.

Dr. Harley said that solving the problem of lupus is especially difficult because features of the illness vary from patient to patient. "We plan to use the utmost care in categorizing each patient. Hopefully, investigators will find this information useful and dependable as they attempt to understand the mysteries of this disease."

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Lupus Registry and Repository

Patients or physicians interested in participating should contact:


  • Ms. Ida Adams 
    Ms. Gail Bruner 
    Oklahoma Medical Research Foundation 
    Oklahoma City, Oklahoma 
    1-800-522-0211 x 7479
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