Region VII Hemophilia Program

描述（由申请人提供）：本申请的长期目标是通过在VII区（爱荷华州、堪萨斯、密苏里州和内布拉斯加州）的多学科综合血友病治疗中心（HTC）进行评估、监测、外展、教育、咨询和管理，预防血友病并发症。除了努力实现该项目在这五年供资期内的国家目标，以扩大UDC队列，将国家数据库从纸质数据库过渡到电子数据库，从电子邮件过渡到网络数据库，扩大数据库以收集更多的相关数据，并设计预防信息和战略，与其他相关机构和非专业组织（如国家血友病基金会和国家血栓形成和血栓形成联盟）进行临床研究和数据共享，该区域项目研究的假设是，随着身体活动的增加，血友病或血管性血友病患者的并发症会减少。这项名为“增加体力活动/减少并发症”的研究将包括设计、实施和评估一项新计划，旨在通过HTC增加13-21岁出血性疾病患者的体力活动，作为综合护理的一部分。通过先前通过UDC收集的数据，该项目的重要性显而易见。来自第七区的926名参加UDC的患者中有24%被归类为超重，17%报告使用手杖、拐杖或助行器，3.4%使用轮椅，26%的患者报告其活动水平受到限制。在他们的年度综合诊所访问期间，拟议研究的参与者将收到描述来年身体活动计划的教育材料。将在综合门诊访视期间收集数据，目前正在进行。将在参与后3个月、6个月和9个月从调查表中收集更多数据，并在12个月参与者返回进行年度访问时收集更多数据。对于将活动频率保持在目标25%以内的人来说，预期结果将是BMI、目标关节数量、活动限制和辅助设备的使用减少，以及运动范围增加。结果可以应用于一般人群，关于增加身体活动对健康状况的益处，如2010年健康人群目标中所述，“通过日常身体活动改善健康，健身和生活质量。"

DESCRIPTION (provided by applicant): The long-term objective of this application is to prevent complications of hemophilia through assessment, surveillance, outreach, education, consultation, and management in multidisciplinary comprehensive hemophilia treatment centers (HTCs) in Region VII (Iowa, Kansas, Missouri and Nebraska). In addition to work toward the national aims of the project for this 5-year period of funding to expand the UDC cohort, transition the national database from paper to electronic, and from email based to web-based, to expand the database to collect additional relevant data, and to design prevention messages and strategies, clinical research and data sharing with other relevant agencies and lay organizations such as the National Hemophilia Foundation and the National Alliance for Thrombosis and Thrombophilia, the regional project looks at the hypothesis that with increased physical activity, persons with hemophilia or von Willebrand disease will have fewer complications. The proposed study, "Adding Physical Activity/Subtracting Complications" will include designing, implementing and evaluating a new program aimed at increasing physical activity in persons ages 13-21 with bleeding disorders as part of comprehensive care through HTCs. The significance of this project is clearly evident through the data previously collected through UDC. 24% of the 926 patients from Region VII who have participated in UDC are categorized as being overweight, 17 % report using canes, crutches, or walkers, 3.4% use wheelchairs, and 26% of the total patients reported restrictions in their activity level. During their annual comprehensive clinic visit, participants in the proposed study would receive educational materials describing physical activity plans for the upcoming year from which to choose. Data will be collected during the comprehensive clinic visit as it is currently being done. Additional data would be collected at three, six and nine months of participation from questionnaires, and at twelve months, when the participants return for their annual visit. The expected results for persons who maintained frequency of activity within 25% of the goal would be decreases in BMI, number of target joints, activity restrictions, and use of assistive devices, and an increase in range of motion. Results can be applied to the general population regarding the benefit of increased physical activity to health status as described in Healthy People 2010 goal to "Improve health, fitness, and quality of life through daily physical activity."