Prevention of the Complications of Bleeding Disorders Thru Hemophilia Treatment..

描述(申请人提供)：本申请的目的是通过实施基于在多学科综合护理诊所的临床研究中获得的知识的预防计划来预防血友病并发症。具体目标是(1)扩大对出血性疾病患者的全面预防服务，(2)增加UDC和其他预防研究的服务和招募人数，(3)促进HTC人员获得适当的培训资源，(4)协调该地区HTC的发展计划、目标、目标、监测和报告；(5)继续收集与感染和出血并发症有关的数据，可用于临床研究，从而改善对使用这些中心的患者的护理，并制定当地研究方案，以及(6)全面参与协调委员会。为了实现这些具体目标，该区域将(1)保持与其他提供者的核心工作人员和关系，并在进行UDC研究的诊所提供这些关系；(2)完成Lab Tracker数据库的实施，并利用它和UDC针对服务不足的地区；(3)为工作人员培训提供几个机会；(4)继续使用两种评估工具来衡量HTC的有效性；(5)继续努力招收病人，重点是年度重新评估和两岁以下儿童的招生，以及(6)首席调查员将在协调委员会中发挥积极作用，因为他们努力扩大HTC研究活动的范围。这项研究将通过开发更好的治疗方案，显著改善血友病和其他出血性疾病患者的生活。所获得的知识也可以对其他患有慢性疾病的人有利，因为我们更好地定义了这些疾病对个人及其家庭的影响。最后，它可能会产生更全球性的影响，因为我们在出血性疾病社区设计干预措施，以解决常见问题，如肥胖，肥胖症增加了对出血性疾病患者关节的影响。

DESCRIPTION (provided by applicant): The objective of this application is to prevent complications of hemophilia by implementing prevention programs based on knowledge gained in clinical research in multidisciplinary comprehensive care clinics. The specific aims are (1) expand the provision of comprehensive prevention services to persons with bleeding disorders, (2) increase the number of individuals served and recruited to the UDC and other prevention studies, (3) facilitate access to appropriate training resources for HTC personnel, (4) coordinate the development program plans, goals, objectives, monitoring and reporting for the HTCs in the Region; and develop appropriate management and evaluation systems to ensure that the HTCs implement the activities of this program, (5) continue to collect data related to infectious and bleeding complications that could be used for clinical research leading to improved care for the patients using these centers and develop local research protocols, and (6) participate fully in the Coordinating Committee. To meet these specific aims, the Region will (1) maintain a core staff and relationships with other providers and have these available at clinics where the UDC study is being conducted, (2) complete the implementation of the Lab Tracker database and use it and the UDC to target underserved areas, (3) offer several opportunities for staff training, (4) continue the use of two evaluation tools to measure the effectiveness of the HTCs, (5) continue to make efforts to enroll patients focusing on the annual reevaluation and the enrollment of children under the age of two, and (6) the principal investigator will take an active role in the coordinating committee as they work to expand the reach of the research activities of the HTCs. This research will significantly improve the lives of individuals with hemophilia and other bleeding disorders by leading to the development of better treatment regimens. The knowledge gained can also be of benefit to others with chronic disorders as we better define the impact of these disorders on the individual and their family. Lastly it may have a more global impact as we design interventions in the bleeding disorders community to address common problems such as obesity which has added impact to the joints of individuals with bleeding disorders.