The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) consists of six sites, throughout the United States, that perform longitudinal, population-based surveillance of multiple muscular dystrophies to better understand their public health and clinical impacts. In 2014, RTI International and the University of North Carolina, with the collaboration of the North Carolina Department of Health and Human Services Division of Public Health, were funded to establish a new MD STARnet surveillance project in North Carolina's Piedmont (central) region. In the next funding cycle, we propose to continue as a site and serve as MD STARnet's Data Coordinating Center (DCC) to provide expert leadership and support of data collection, quality assurance and quality control (QA/QC), data pooling, and data access. RTI will ensure the highest levels of data security, ease of data access, and increased scientific productivity throughout MD STARnet by increasing the productivity and data quality of medical records abstraction (Aim 1); creating a new internal website for greater data security, utility, and user-friendliness (Aim 2); producing data management dashboards to provide real-time tracking of every stage in the surveillance process (Aim 3); enhancing MD STARnet's scientific productivity by standardizing data fields, QA/QC procedures, manuscript boilerplate, and other data procedures (Aim 4); and providing a smooth, rapid transition from the current DCC with expert data archive and transfer, agile design of data entry tools, and in-person or remote training (Aim 5).
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) consists of six sites throughout the United States, who identify and track patients with different forms of muscular dystrophy, collect data on patient characteristics, and conduct research to better understand the public health and clinical impacts of this group of diseases. As the Data Coordinating Center, RTI International will provide expert leadership and support of data collection, quality assurance and control, data pooling, and data access.
