? Title: Thrombosis and Hemostasis Centers Research and Prevention Network ? Background: Venous thromboembolism and thrombophilia are common. However, (a) many of the ? mechanisms predisposing individuals, particularly those of black race, are not known, (b) health ? care delivery to these patients in the U.S. is often highly variable and (c) public awareness of these ? disorders and their seriousness is low. ? Objectives: To create a Comprehensive Thrombosis Clinic structure that (a) allows epidemiologic ? research to be done through use of a clinic patient registry, (b) enables the addition of a biologic ? sample repository to allow basic research questions to be asked off the Registry, (c) uses the ? Registry as an identification point of eligible patients for prospective studies on thrombosis and ? thrombophilia, (d) creates patient support group structures within North Carolina and (e) educates ? the public, patients and health care providers about thrombosis. ? Specific Aims:
Aim #1 : Support and expand the existing research capacity of the UNC ? Thrombophilia Program to allow collaborative epidemiological research on thrombosis and ? thrombophilia to be done;
Aim #2 : Engage in prospective, epidemiologic studies of the established ? patient cohort;
Aim #3 : Provide patient and provider education by working closely with regional and ? national organizations. ? Methods: In a collaborative effort with 7 other funded thrombophilia centers demographic and clinic ? data on outpatients and inpatients with thrombosis and/or thrombophilia will be entered into a ? Registry. These data will be used for collaborative epidemiologic studies. The principal investigator ? of this grant application will focus on the study of patients with (a) rare clotting disorders (compound ? thrombophilias), and (b) uncommon blood clots (abdominal venous thromboses). Retrospective ? studies on the former and latter, and a prospective study of the latter patient population during ? pregnancy are proposed. The Registry data will also be evaluated for differences in referral patterns ? of patients of black compared to people of white race, and differences in the type of thrombosis they ? have had. The biologic sample repository will serve as a resource to study yet unknown risk factors ? of blood clots in people of black race. Finally, a mechanism is suggested to create patient support ? groups throughout N.C. and to improve the education of the public and of health care providers ? through structured seminars. Close collaboration with national non-profit patient and health care ? provider organizations are suggested to maximize the success of these efforts. ? ? ? ?
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