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 dont 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. Were looking for about 1,500 patients with the syndrome and about 500 others who have the antibodies
Contact: David Williamson
University of North Carolina at Chapel Hill