They are asking patients suffering from the condition and other doctors who treat it to help create the network by contacting them and agreeing to participate.
Disease registries can speed up understanding of what causes many illnesses, development of diagnostic tests and better treatments by boosting the number of patients and information available for study, said Dr. Robert Roubey, associate professor of medicine at UNC and national director of the effort.
“The antiphospholipid syndrome is an autoimmune condition in which certain abnormal antibodies are associated with blood clots, strokes and miscarriages,” Roubey said. “It affects a subset of patients with lupus, but also can affect people who don’t have lupus at all.”
Despite a lack of public awareness, the illness is not uncommon, he said. An estimated 15 percent to 20 percent of all patients with blood clots in their veins, up to a third of stroke patients under age 50 and somewhere between 5 percent and 15 percent of women who miscarry repeatedly suffer from the condition. Typically, patients’ blood clots too readily.
The Antiphospholipid Syndrome Collaborative Registry, or APSCORE, includes investigators at UNC and seven other institutions: the Hospital for Special Surgery at the Weill-Cornell School of Medicine in New York City, Johns Hopkins and Duke universities, Morehouse School of Medicine in Atlanta, Ball Memorial Hospital in Muncie, Ind., and the universities of Utah in Salt Lake City and Texas at San Antonio.
“Our goal over five years is to enroll overall about 2,000 patients,” Roubey said. “We’re looking for about 1,500 patients with the syndrome and about 500 others who have the antibodies but have not yet suffered from a blood clot or miscarriage.”
The National Institute of Arthritis and Musculoskeletal Diseases, part of the National Institutes of Health, will support the registry at the eight centers with a $2.5 million contract over five years. Dr. Stephan Moll, a hematologist who is assistant professor of medicine at UNC, is helping develop the new registry, and UNC is becoming known as an important center for antiphospholipid syndrome treatment.
“APSORE will include a detailed clinical database and a repository for patient blood and DNA samples, both designed to facilitate research,” Roubey said. “It should be enormously valuable to those of us who are trying to understand this disease and before long, to patients as well.”
Investigators around the world can apply to use the registry’s database and samples for their studies, he said.
“Like other autoimmune diseases such as rheumatoid arthritis and lupus, we don’t really know what causes the antiphospholipd syndrome,” Roubey said. “Both a genetic predisposition and environmental factors likely play a role.”
Blood thinners, such as heparin and warfarin, are the standard treatment for dissolving and preventing blood clots and for preventing miscarriages in a patients with the syndrome. Such drugs are somewhat effective, but they pose a high risk of bleeding complications, he said. At least one biotechnology company is working on a new immunological approach designed to shut down the body’s production of the abnormal antibodies.
Patients and physicians interested in APSCORE can call Roubey and registry staff at (919) 966-0572 for more information. The registry can also be reached by e-mail at apscore@med.unc.edu.
By DAVID WILLIAMSON
UNC News Services
Contact: David Williamson, (919) 962-8596