Comp C-Data Coordinating Center for Surveillance and Research

Comp C-监测和研究数据协调中心

• 批准号: 8915517
• 负责人: Paul A Romitti
• 金额: $ 25万
• 依托单位: UNIVERSITY OF IOWA
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8915517
• 关键词: Comp; Data; Coordinating; Center; Surveillance

DESCRIPTION (provided by applicant): The Muscular Dystrophy surveillance, tracking, and Research Network (MD STARnet) was established in 2002 to conduct population-based surveillance and long-term follow-up of individuals with Duchenne and Becker muscular dystrophy (DBMD). Longitudinal surveillance for DBMD has been ongoing since 2004. Active follow-up commenced in 2007 by administering telephone interviews to primary caregivers of DBMD cases to determine medical interventions and influence of family characteristics, geography, insurance status, and social support on clinical outcomes. Additional follow-up administered included mailed surveys to adult DBMD cases and their caregivers to examine needs and quality of life for these individuals and, most recently to describe transitions from pediatric to adult clinical care and other life experiences for late-adolescent and adult DBMD cases. In 2012, the MD STARnet was expanded to include cross-sectional surveillance for seven additional MDs (congenital, distal, Emery-Dreifuss, facioscapulohumeral, limb-girdle, myotonic, and oculopharyngeal). Our Iowa Site was one of four charter awardees for the MD STARnet in 2002 and was successfully refunded in 2006 and 2011. The Iowa Site has also served as the national MD STARnet Data Coordinating Center (DCC) since it was established in 2003. As the DCC, we successfully created and implemented an infrastructure that provided informatics expertise and support for all population-based DBMD longitudinal surveillance and research activities and for population-based cross-sectional surveillance for the additional MDs. We propose to continue as the DCC to provide expert informatics support for surveillance and research of MDs and selected neuromuscular diseases (NMDs). Specifically, we aim to: 1) develop and maintain software applications, databases, and related documentation for surveillance data collection and analysis; 2) manage the pooling, cleaning, and dissemination of surveillance data collected by each project site; 3) distribute and provide support for application and databases required for surveillance data collection, clinical review, and data analysis; 4) provide technical assistance through participation in workgroups, committees, and in-person meetings; and 5) participate in the planning and implementation of the project evaluation plan. The Iowa Site has been successful with funding received to establish and operate the DCC, and we are enthusiastic about continuing such work. Continued use of our experienced DCC infrastructure will permit an efficient use of project resources for informatics expertise and support for surveillance and research activities for MDs and expansion of surveillance activities to selected NMDs.

描述（由申请人提供）：2002年成立了肌肉营养不良的监测，跟踪和研究网络（MD Starnet），以对Duchenne和Becker肌肉营养不良症（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。2007年开始对DBMD病例的主要护理人员进行电话采访，以确定家庭特征，地理位置，保险状况和社会支持对临床结果的影响。对成人DBMD案件及其护理人员进行的邮寄调查的其他随访包括检查这些人的需求和生活质量，最近，描述了从儿科到成人临床护理的过渡以及对后期和成人DBMD案件的其他生活经验。 2012年，MD Starnet扩展了，包括另外七个MD的横截面监视（先天性，远端，Emery-Dreifuss，facioscapulohumeral，Limb-Girdle，Myotonics和Eculopharyngeal）。我们的爱荷华州网站是2002年MD Starnet的四名宪章获奖者之一，并于2006年和2011年成功退款。自2003年成立以来，爱荷华州也已担任国家MD Starnet数据协调中心（DCC）。作为DCC，我们作为DCC。作为DCC，我们延续了基础和支持的基础，并实施了大量的人群培训，并提供了DBS的良好范围，并提供了DBS，并提供了DB的范围，并提供了DBS的专业知识，并提供了DBM的范围。用于基于人群的跨截面监视，以供额外的MDS。我们建议继续作为DCC，以提供专家信息学支持，以对MDS的监视和研究以及选定的神经肌肉疾病（NMDS）。具体来说，我们的目标是：1）开发和维护用于监视数据收集和分析的软件应用程序，数据库和相关文档； 2）管理每个项目站点收集的监视数据的集合，清洁和传播； 3）分配并提供支持监视数据收集，临床审查和数据分析所需的应用程序和数据库； 4）通过参加工作组，委员会和面对面会议提供技术援助； 5）参与项目评估计划的计划和实施。爱荷华州的网站已经成功地获得了建立和运营DCC的资金，我们对继续这样的工作充满热情。继续使用我们经验丰富的DCC基础设施将有效利用项目资源来提供信息学专业知识，并支持MDS的监视和研究活动以及扩展监视活动向选定的NMD。