Thrombosis and Hemostasis Centers Research and Prevention Network

Univ Of North Carolina Chapel Hill, Chapel Hill NC

Investigators

Linked publications & trials

Abstract

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