Region VII Hemophilia Program

描述（由申请人提供）：本申请的长期目标是通过在第七地区（爱荷华州、堪萨斯州、密苏里州和内布拉斯加州）的多学科综合血友病治疗中心（HTCs）进行评估、监测、外展、教育、咨询和管理来预防血友病并发症。除了努力实现该项目在这5年资助期内的国家目标，扩大UDC队列，将国家数据库从纸质转向电子，从基于电子邮件转向基于网络，扩大数据库以收集更多相关数据，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和血栓病联盟）进行临床研究和数据共享，该区域项目关注的假设是，随着体育活动的增加，血友病或血管性血友病患者的并发症将减少。拟议的研究“增加体力活动/减少并发症”将包括设计、实施和评估一项旨在增加13-21岁出血性疾病患者体力活动的新计划，作为通过HTCs进行综合护理的一部分。通过先前通过UDC收集的数据，可以清楚地看出该项目的重要性。在参加UDC的926名患者中，24%的患者被归类为超重，17%的患者报告使用手杖、拐杖或助行器，3.4%的患者使用轮椅，26%的患者报告活动水平受到限制。在他们每年一次的综合门诊访问中，拟议研究的参与者将收到描述来年体育活动计划的教育材料，供他们选择。数据将在目前正在进行的综合门诊访问期间收集。在参与问卷调查的第3个月、第6个月和第9个月以及参与者每年回访的第12个月收集额外的数据。将活动频率保持在目标的25%以内的人的预期结果将是BMI、目标关节数量、活动限制和辅助装置使用的减少，以及活动范围的增加。结果可以应用于一般人群，关于增加体育活动对健康状况的好处，正如健康人2010年目标所描述的那样，“通过日常体育活动改善健康、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."