Thrombosis and Hemostasis Centers Research and Prevention Network

描述(申请人提供)：诊断测试和治疗管理方面的最新进展提高了我们为止血和血栓性疾病患者提供有效护理的能力。然而，由于诊断测试不完整或不正确、管理策略不到位或无法使用具有多学科专业知识的设施，许多患者仍然得到了不充分的护理。杜克血栓和止血中心是由疾病控制和预防中心(CDC)支持的血栓形成试点计划的创始中心之一，它整合了临床专业知识领域，为血栓性和出血性疾病患者提供协调护理。该中心维护患者登记，提供访问临床研究的途径 协议，强调患者教育，并为对止血障碍感兴趣的提供者制定了培训计划。这项建议的主要目标是加强杜克大学项目的发展，使其成为美国疾病控制与预防中心以及血栓和止血研究与预防网络中的其他中心的参与机构。我们建议通过以下目标来实现这一目标：(1)建立杜克血栓和止血中心，作为CDC赞助的研究和预防网络的组成部分，共同开发研究、教育目标，并为复杂的出血性和血栓栓塞性疾病患者建立诊断和治疗标准；(2)通过开发衡量临床结果、生活质量和患者满意度的评估工具，改善患者对血栓栓塞症和出血性疾病的了解，并扩大对整个网络中未得到充分服务的人群的护理；(3)通过该网络制定和实施研究议程，以解决尚未回答的流行病学、诊断和治疗问题；以及(4)促进培训计划，促进血栓形成和止血方面的独立研究人员、专家临床医生和其他提供者的发展。我们建议与疾病控制和预防中心合作，继续参与血栓形成和止血中心网络的发展。这些中心将为有复杂凝血和出血问题的患者提供多学科的专业知识，改善我们可以为这些患者提供的护理。此外，这些中心将为患者和提供者提供获取最新临床研究以及教育机会的途径。

DESCRIPTION (provided by applicant): Recent advances in diagnostic testing and therapeutic management have improved our ability to deliver effective care to patients with hemostatic and thrombotic disorders. Many patients still receive inadequate care, however, related to incomplete or incorrect diagnostic testing, inadequate management strategies, or lack of access to facilities with multi-disciplinary expertise. The Duke Thrombosis and Hemostasis Center, one of the founding centers in the Thrombophilia Pilot Program supported by the Centers for Disease Control and Prevention (CDC), integrates areas of clinical expertise to provide coordinated care for patients with thrombotic and hemorrhagic disorders. The Center maintains a patient registry, provides access to clinical research protocols, emphasizes patient education, and has developed a training program for providers interested in disorders of hemostasis. The primary objective of this proposal is to enhance development of the Duke program as a participating institution with the CDC and other Centers in the Thrombosis and Hemostasis Research and Prevention Network. We propose to accomplish this through the following Aims: (1) Establish the Duke Thrombosis and Hemostasis Center as an integral member of the CDC-sponsored Research and Prevention Network to collaboratively develop research, educational objectives, and establish diagnostic and therapeutic standards for patients with complex hemorrhagic and thromboembolic disorders; (2) Enhance patient care by developing evaluation tools that measure clinical outcomes, quality of life and patient satisfaction, improving patient understanding of thromboembolic and hemorrhagic disorders, and expanding the delivery of care to underserved populations across the Network; (3) Develop and implement a research agenda through the Network to address unanswered epidemiologic, diagnostic, and therapeutic questions; and (4) Promote training programs that foster the development of independent researchers and expert clinicians and other providers in thrombosis and hemostasis.We propose to work with the Centers for Disease Control and Prevention to continue our participation in the development of a network of Thrombosis and Hemostasis Centers. These Centers will provide multidisciplinary expertise for patients with complex clotting and bleeding problems, improving the care that we can deliver to these patients. In addition, the Centers will provide access to the most up-to-date clinical research, as well as educational opportunities for patients and providers.