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Methods: A web-based data registry was implemented at the 8 Thrombophilia Pilot Centers in August 2003. Information collected includes demographics, referral patterns, and medical history, diagnostic laboratory and radiographic data.

Results: Of 2983 unique patients enrolled in the Registry as of October 2006, 285 (9.6%) were referred for APS. Most were female (n= 205; 72%) and Caucasian (n= 234; 82%). Twenty-seven were pediatric (9.5%). The primary referral sources for APS patients were Hematology/Oncology (n= 68; 24%), Internal Medicine (n= 40; 14%), and Family Medicine (n= 38; 13.3%). Clinical manifestations included venous thromboembolism (deep venous thrombosis: n= 158; 55.4%; pulmonary emboli: n= 82; 28.8%), arterial thromboembolism (stroke: n= 50; 17.5%), and adverse pregnancy outcomes (n= 47 of 205; 23%). Sixty-six patients (30%) had a concurrent autoimmune disorder. Fifty-one women (25%) were referred for pre-pregnancy counseling or pregnancy management. Venous thromboembolism in unusual locations was not uncommon (intraabdominal: n= 11 (3.9%); cerebral sinus: n= 9 (3.2%); inferior vena cava: n= 8;(2.8%); intraocular: n= 8;(2.8%)). A positive family history was reported by 52 patients, with thrombosis (n= 29; 56%) and stroke (n= 13; 25%) being the most common manifestations reported in family members. Most patients were subsequently followed through the Thrombosis Center (n= 214; 75%).

Conclusions: Patients with APS are frequently referred to specialized Thrombosis Centers for evaluation and management of their disease. Almost 10% are pediatric, and a family history of thrombosis is …