Thrombosis and Hemostasis Centers Research and Prevention Network

描述（由申请人提供）： 血栓和止血中心研究和预防网络 背景：静脉血栓栓塞和血栓形成倾向是常见的。（一）许多 诱发个体，特别是黑人的机制尚不清楚，（B）健康 在美国，向这些患者提供的护理往往是高度可变的，（c）公众对这些问题的认识 疾病，其严重性很低。 目的：建立一个综合性血栓形成诊所结构，（a）允许流行病学 通过使用临床患者登记进行研究，（B）能够添加生物制剂 样本库，以允许基本的研究问题被问过注册表，（c）使用 登记作为血栓形成前瞻性研究合格患者的识别点， 血栓形成倾向，（d）在北卡罗来纳州内创建患者支持小组结构，以及（e）教育 公众、患者和卫生保健提供者对血栓形成的认识。 具体目标：目标1：支持和扩大研究所的现有研究能力 血栓形成计划，允许对血栓形成和 血栓形成倾向;目标#2：参与已建立的前瞻性流行病学研究 患者队列;目标3：通过与区域和 国家组织。 方法：在与其他7个资助的血栓形成中心的合作努力中， 关于患有血栓形成和/或血栓形成倾向的门诊患者和住院患者的数据将输入到 注册表这些数据将用于合作流行病学研究。主要研究者 这项拨款申请的重点是研究患者（a）罕见的凝血障碍（化合物 血栓形成倾向），和（B）不常见的血块（腹部静脉血栓形成）。回顾性 对前者和后者的研究，以及对后者患者人群的前瞻性研究， 怀孕被提议。还将评估登记处数据中转诊模式的差异 黑人患者与白色人种相比， 都有过生物样本库将作为研究未知风险因素的资源 血液凝块的几率最后，提出了一种建立患者支持的机制 在整个N.C.并改善公众和卫生保健提供者的教育 通过组织研讨会。与国家非营利性患者和医疗保健机构密切合作 建议提供者组织尽可能扩大这些努力的成功。

DESCRIPTION (provided by applicant): 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.