Comp D-Cost of Illness Analysis of MD and Neuromuscular Disorders

Comp D-MD 和神经肌肉疾病的疾病成本分析

• 批准号: 8821147
• 负责人: Paul A Romitti
• 金额: $ 12.5万
• 依托单位: UNIVERSITY OF IOWA
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2018-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8821147
• 关键词: Comp; Cost; Illness; Analysis; MD

DESCRIPTION (provided by applicant): The current knowledge of the economic burden of MDs is limited by the methodologies used to estimate cost. We will use longitudinal, population-based surveillance data collected by the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to identify and estimate costs of procedures for patients with confirmed MDs and well-characterized natural histories. The MD STARnet was established in 2002 to conduct population-based surveillance and long-term follow-up of cases with Duchenne and Becker muscular dystrophies (DBMD); longitudinal surveillance for DBMD has been ongoing since 2004. In 2011, the MD STARnet was expanded to include cross-sectional surveillance for seven additional MDs (congenital, distal, Emery-Dreifuss, facioscapulohumeral, limb-girdle, myotonic, and oculopharyngeal); surveillance of these MDs will be expanded to conduct longitudinal surveillance. We will evaluate the economic burden of these MDs from longitudinal surveillance of health care services received, private and public claims databases, and a self-report Health Care Services Cost-of-Illness survey. We have successfully integrated clinical, programmatic, and referral resources provided by key partners in Iowa, such as the Iowa Neuromuscular Program, with the active, population-based resources of the Iowa Registry for Congenital and Inherited Disorders to conduct longitudinal surveillance of DBMD and cross-sectional surveillance for the additional MDs. Also, our partnerships with the Reproductive Molecular Epidemiology Research and Education Program and the Center for Public Health Statistics at The University of Iowa will provide experienced investigators to conduct data analyses and publish cost-of-illness data. To accomplish our study objectives, we aim to: 1) conduct cost-of- illness analyses for DBMD and other selected MDs; 2) develop and implement a Health Care Services Cost-of-Illness survey for selected MDs; 3) estimate cost of compliance with care considerations for selected MDs; and 4) disseminate research findings to stakeholders and the scientific community. The availability of population-based cost estimates of treatments recommended in the care of MDs will be a useful resource for financial planning by health care practitioners and families at the time of diagnosis and as disease progresses.

描述（由申请人提供）：目前对医学博士经济负担的了解受到用于估算成本的方法的限制。我们将使用肌营养不良症监测、跟踪和研究网络 (MD STARnet) 收集的纵向、基于人群的监测数据来识别和估计已确诊的肌营养不良症和具有良好特征的自然史患者的手术费用。 MD STARnet 成立于 2002 年，旨在对杜氏肌营养不良症和贝克尔肌营养不良症 (DBMD) 病例进行基于人群的监测和长期随访；自 2004 年以来，DBMD 的纵向监测一直在进行。2011 年，MD STARnet 扩大到包括另外 7 个 MD 的横断面监测（先天性、远端、Emery-Dreifuss、面肩肱、肢带、强直和眼咽）；对这些MD的监测将扩大到进行纵向监测。我们将通过对所接受的医疗保健服务的纵向监测、私人和公共索赔数据库以及自我报告的医疗保健服务疾病成本调查来评估这些医学博士的经济负担。我们成功地将爱荷华州主要合作伙伴（例如爱荷华州神经肌肉计划）提供的临床、计划和转诊资源与爱荷华州先天性和遗传性疾病登记处基于人口的活跃资源整合起来，对 DBMD 进行纵向监测，并对其他 MD 进行横断面监测。此外，我们与爱荷华大学生殖分子流行病学研究和教育计划以及公共卫生统计中心的合作伙伴关系将提供经验丰富的研究人员来进行数据分析并发布疾病成本数据。为了实现我们的研究目标，我们的目标是： 1) 对 DBMD 和其他选定的 MD 进行疾病成本分析； 2) 为选定的医学博士制定并实施医疗保健服务疾病成本调查； 3) 估计所选 MD 遵守护理注意事项的成本； 4) 向利益相关者和科学界传播研究成果。在医学博士的护理中，基于人群的治疗建议成本估算的可用性将成为医疗保健从业者和家庭在诊断时和疾病进展时进行财务规划的有用资源。