New registry will benefit patients with antiphospholipid syndrome (APS)

April 18, 2001

Patients with antiphospholipid syndrome (APS) will benefit from a new national registry and tissue repository sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Center on Minority Health and Health Disparities (NCMHD). The coordinating center will reside at the University of North Carolina, Chapel Hill (UNC).

APS is an autoimmune disorder in which the body appears to recognize certain phospholipids (fatty molecules that are important components of a cell's membrane) as foreign substances and produces antibodies against them. People with APS may experience blood clots leading to heart attack, stroke or loss of the fetus during pregnancy. APS may occur in patients with lupus and related autoimmune diseases or as a primary syndrome in otherwise healthy individuals. Biomedical researchers at eight medical centers will collect and update clinical, demographic and laboratory information from patients with APS and make it available to researchers and to medical practitioners concerned with the diagnosis and treatment of this syndrome. According to Stephen I. Katz, M.D., Ph.D., NIAMS director, "The availability of this information will permit better comparisons among clinical research projects and help rheumatologists, obstetricians and other physicians resolve problems associated with the many manifestations of the syndrome."

In APS, blood clots may affect any part of the body. In addition to stroke and heart attack, abnormalities of the heart valves, kidney disease, thrombocytopenia (a low level of platelets in the blood) and leg ulcers have been associated with the disorder. APS takes a particular toll during pregnancy, when the syndrome may cause miscarriage, stillbirth, retarded growth of the fetus or pre-eclampsia (toxemia and high blood pressure). In the general population, APS may account for 20 percent of deep vein thrombosis cases, one-third of strokes in people under age 50, and 5 to 15 percent of recurrent miscarriages.

Antiphospholipid antibodies are present in the blood of about one-third of patients who have lupus; approximately one-third of those with antibodies (10 to 15 percent of all lupus patients) have clinical signs of the syndrome. Antiphospholipid antibodies have also been identified in people who do not have an autoimmune disorder like lupus and who may not have any symptoms. Registry scientists will collect data on patients with clinical signs of APS and on asymptomatic individuals who have antibodies but have not yet developed any clinical signs.

The registry/repository is expected to begin operating in late spring. About 2,000 patients will be enrolled over the next five years at UNC and the following seven centers:

Hospital for Special Surgery, Weill-Cornell University Medical Center in New York City;
Johns Hopkins University Medical Center in Baltimore, Md.;
Duke University Medical Center in Durham, N.C.;
Morehouse School of Medicine in Atlanta, Ga.;
Ball Memorial Hospital/Indiana University in Muncie;
University of Texas Health Science Center at San Antonio; and
University of Utah Health Sciences Center in Salt Lake City.
For additional information or to be placed on a list of people to be notified when registry enrollment begins, contact:

Robert A. S. Roubey, M.D.
Associate Professor of Medicine
Division of Rheumatology and Immunology, CB #7280
Thurston Building, Room 3330
University of North Carolina
Chapel Hill, NC 27599-7280
(919) 966-0572 (registry phone)

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).

NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases

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