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）：当前对MDS经济负担的了解受到用于估计成本的方法的限制。我们将使用肌肉营养不良监测，跟踪和研究网络（MD Starnet）收集的基于人群的纵向监视数据（MD Starnet），以确定和估计确认的MDS患者和经过良好特征的自然历史的程序成本。 MD Starnet于2002年成立，旨在对Duchenne和Becker肌肉营养不良（DBMD）进行基于人群的监视和长期随访；自2004年以来，DBMD的纵向监视一直在进行。2011年，MD Starnet扩大了，包括七个MDS（先天性，远端，Emery-Dreifuss，facioscapulohumeral，facioscapulohumeral，limb-girdle，myotonic，myotonic，myotonic和oculophropharyngeal）的横截面监视；这些MD的监视将扩大以进行纵向监视。我们将从收到的医疗保健服务，私人和公共索赔数据库以及自我报告医疗保健服务成本成本调查的纵向监视中评估这些MDS的经济负担。我们已经成功整合了爱荷华州主要合作伙伴提供的临床，程序化和推荐资源，例如爱荷华州神经肌肉计划，以及爱荷华州的积极，基于人群的基于人群的资源，用于先天性疾病和遗传障碍，以进行DBMD和跨部门纵向监视，以供DBMD和跨部门进行纵向监测。此外，我们与生殖分子流行病学研究与教育计划以及爱荷华大学公共卫生统计中心的合作伙伴关系将为经验丰富的研究人员提供数据分析并发布成本成本数据。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进行疾病分析； 2）针对选定的MDS开发和实施一项卫生保健服务成本调查； 3）估计对选定MD的护理考虑的遵守成本； 4）将研究结果传播给利益相关者和科学界。在诊断时，随着疾病的进展，医疗保健从业人员和家人的财务计划中，对MDS护理中建议的治疗的基于人群的成本估算的可用性将是一种有用的资源。