Data Acquisition & Processing
The Data Coordination Center (DCC) serves as a critical element of the IDCRP’s research efforts by providing high-quality data collection, management, processing, and access.
The DCC team is comprised of data system designers, data managers, data entry staff, and SAS / Oracle programmers (led by Edward Parmelee, Chief) who support IDCRP research investigations by providing expertise related to the conceptualization, design, collection, management and cleaning, analysis, and publication of study data. The essential resources provided by the DCC are utilized for all IDCRP research studies where the Program is the primary source of data as either the collector or repository. During the past year, the data configuration programming and SAS programming groups were combined with the goal of improving productivity and effectiveness. Overall, 31 IDCRP studies were supported by the DCC in 2018, including 4 studies that were entirely Military Health System (MHS) Data Repository-based.
A considerable effort in 2018 was related to expanding the use of the MHS Data Repository as a data source for IDCRP studies. The IDCRP was first granted permission to access this valuable resource several years ago in order to supplement the data utilized in studies from the Trauma-Related Infections and HIV Research Areas. During the past year, the DCC began acquiring data for other studies, including cohorts that are completely virtual (i.e., relying solely on MHS Data Repository). Access to the MHS Data Repository is restricted and the DCC presently is working to increase the number of staff with appropriate clearance to be allowed to abstract data.
Another accomplishment by IDCRP personnel was the implementation of REDCap, which is a fully-functional electronic data collection system and workflow approach widely used by academic organizations, as well as the DoD for designing and entering clinical data into study databases. The system provides participant interaction features not previously available, such as text messages. Using REDCap, the DCC completed setup of data collection systems for two protocols that required rapid development due to time constraints, something we had not been able to do with our legacy data systems. The protocols were the Shiga Toxin-producing Escherichia coli (STEC) Outbreak Investigation in the EIDAR Research Area and the Pragmatic Assessment of Influenza Vaccine Effectiveness in the DoD (PAIVED) trial as part of the ARI Research Area.
Data continued to be acquired from the MHS Medical Data Repository to support research studies under the HIV and Trauma- Related Infections Research Areas, and to collect data for retrospective cohorts (e.g., Chikungunya Virtual Cohort under EIDAR Research Area and HIV Virtual Cohort under the HIV Research Area). As the DCC team gains experience with the MHS Medical Data Repository, new ways to utilize this valuable resource are being examined.
The DCC will continue to build processes around the REDCap system with the goal of supporting interventional studies, as well as transferring long-term studies from the older, legacy systems into REDCap. The registry hosted by the IDCRP to store protected health information and personally identifiable information about subjects enrolled in IDCRP studies no longer meets the evolving needs of the Program. Thus, a new registry workflow based in the REDCap system to host this information is under development and is expected to be implemented soon. As the IDCRP moves toward more interventional clinical studies, DCC processes and procedures will be comprehensively examined to assess compliance with federal (i.e., FDA) and international standards.
Acquired data from the MHS Data Repository for four studies and completed approval process necessary to acquire data for two additional studies.
Employed a new software tool called Remark OMR, which allows for the scanning of standard-bubble sheets used to collect information from a large group of subjects and/or in situations when electronic capture of data is not possible.
On-boarded and implemented use of REDCap with setup of electronic data collection systems for two new high priority protocols. Data collection systems were designed, programmed, and put into production within approximately two months.
Implemented the National Institutes of Health Toolkit for cognitive assessment for the HIV Research Area ALLHANDs protocol.