Prevention of the Complications of Bleeding Through HTCs

描述（由申请方提供）：本申请的目的是通过在威斯康星州、伊利诺伊州、明尼苏达州、北达科他州和南达科他州积极实施预防项目来预防血友病并发症。五大湖血友病基金会是这五个州的区域赠款机构，将通过以下方式加强区域中心作为公共卫生预防网络的能力：1）制定和协调一项计划，为出血性疾病患者提供多学科的综合预防服务;（2）制定方案，以确定服务不足的人群，包括少数民族和妇女;（3）促进获得适当的培训和技术援助;（4）促进转诊和获得教育和支助服务;（5）促进和便利保健提供者之间的信息交流和合作;（6）开发适当的管理和评估系统，以跟踪治疗中心实现项目计划、目标和目的的情况，并评估是否符合联邦法规;和（7）参与出血性疾病并发症的监测，包括通用数据收集（UDC）的数据收集和利用该数据的临床研究。该应用程序的具体目标包括：1）通过继续招募遗传性出血性疾病患者来扩大队列; 2）完成数据库从纸质到电子，然后从电子邮件到网络的过渡; 3）设计预防信息和战略，以分享研究结果;以及4）利用验证/扩展的UDC数据来解决诸如V-West提出的临床问题：血友病性关节病患者的关节疾病进展：危险因素和二级预防效果的评估。B.血管性血友病的出血和血管并发症。C.一项评估过渡方案在准备青少年出血性疾病自给自足方面的有效性。预计拟议的研究将有助于加速健康行为的采用，并且从这项研究中吸取的经验教训将适用于更广泛的人群。

DESCRIPTION (provided by applicant): The objective of this application is to prevent complications of hemophilia by proactive implementation of prevention programs in the states of Wisconsin, Illinois, Minnesota, North Dakota, and South Dakota. The Great Lakes Hemophilia Foundation, the Regional Grantee for this five-state region, will enhance the capacity of regional centers as a public health prevention network by: 1) developing and coordinating a plan for multi-disciplinary, comprehensive prevention services for persons with bleeding disorders; (2) developing programs to identify underserved populations including minorities and women; (3) facilitating access to appropriate training and technical assistance; (4) promoting referral and access to educational and support services; (5) promoting and facilitating the exchange of information and collaboration among health care providers; (6) developing appropriate management and evaluation systems to track treatment center achievement of program plans, goals and objectives, and assess compliance with federal regulation; and (7) participating in surveillance for complications of bleeding disorders including data collection for the Universal Data Collection (UDC) and clinical research utilizing that data. The specific aims of this application include the following: 1) To expand the cohort through continued recruitment of individuals with genetic bleeding disorders; 2) To complete a transition of the database from paper to electronic and then from email to web-based; 3) To design prevention messages and strategies to share research findings; and 4) To utilize exising/expanded UDC data to address clinical issues such as these proposed by V-West: a. Joint disease progression in hemophilic patients with established hemophilic arthropathy: Evaluation of risk factors and the effect of secondary prophylaxis. b. Hemorrhagic and vascular complications of von Willebrand disease. c. An evaluation of the efficacy of a transition protocol in preparing adolescents with a bleeding disorder for self-sufficiency. It is anticipated that the proposed research will help to accelerate the adoption of healthy behaviors and that lessons leaned from this research will have application for broader populations.