Thrombosis and Hemostasis Centers Research and Prevention Network

描述(由申请人提供)： 题目：血栓形成和止血中心研究与预防网络 背景：静脉血栓栓塞症和血栓形成症很常见。然而，(A)许多 使个人，特别是黑人种族致病的机制未知，(B)健康 在美国，对这些患者的护理提供往往是高度可变的，以及(C)公众对此的认识 疾病和他们的严重性很低。 目标：创建一个全面的血栓病临床结构，以(A)允许流行病学 将通过使用临床患者登记进行的研究，(B)使能够增加生物 样本储存库，允许从登记处询问基本研究问题，(C)使用 登记作为符合条件的血栓形成和前瞻性研究患者的识别点 (D)在北卡罗来纳州建立患者支持小组结构，(E)教育 公众、患者和医疗保健提供者关于血栓形成的信息。 具体目标：目标1：支持和扩大北大西洋公约组织的现有研究能力 亲血栓计划，允许对血栓形成和血栓形成进行合作流行病学研究 要做的是血栓形成；目标2：对已建立的患者进行前瞻性流行病学研究 患者队列；目标3：通过与地区和医疗机构密切合作，为患者和提供者提供教育 国家组织。 方法：在与其他7个有资金支持的血栓形成中心的合作下，人口统计学和临床 有血栓形成和/或血栓形成的门诊和住院患者的数据将输入到 注册表。这些数据将用于合作的流行病学研究。首席调查员 这项赠款申请的重点将是研究(A)罕见的凝血障碍(化合物 血栓)和(B)罕见的血栓(腹部静脉血栓)。回顾 对前者和后者的研究，以及对后者患者群体的前瞻性研究 怀孕是被提议的。还将评估登记处的数据是否存在转诊模式的差异 黑人患者与白人患者相比，以及他们在血栓形成类型上的差异 有 有。生物样本库将作为研究未知风险因素的资源 黑人种族的血液凝块。最后，提出了建立患者支持机制的建议。 整个北卡罗来纳州的团体，并改善公众和卫生保健提供者的教育 通过有组织的研讨会。与国家非营利性患者和医疗保健机构密切合作 建议提供商组织最大限度地提高这些努力的成功。

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.