A Large-Scale Data Collection System For Epidemiological Studies, Clinical Trials and Cohort Studies In Child Neurology

OBJECTIVE: Development of a large-scale data management system for community-based data collection in northern Nigeria for ascertainment, enrollment, retention, analysis and reporting of epidemiological studies, clinical trials, and cohort studies. METHODS: A REDCap-based data collection system for the BRIDGE (R01 NS113171) and SEED (R01 NS118483) projects with data entry directly into android tablet computers was developed. More than 180 staff working on the BRIDGE (R01 NS113171) and SEED (R01 NS118483) studies were trained in data entry and/or analysis, depending upon their study roles. Data management, personnel management, coding, biostatistics, clinical trials experts, and epidemiologists function as teams across the Nigeria sites and the Vanderbilt data coordinating center via the REDCap system, with multiple weekly meetings. RESULTS: Population-based screening epilepsy screening data for more than 41,000 children, as well as community-based clinical trial and cohort data were managed for over 1770 children in the BRIDGE study. Hospital-based data collection on >1500 children with status epilepticus in the SEED study, including MRI, EEG-video, genomic, and clinical data were also managed. Linked to these data systems are also data for qualitative focus groups, and economic studies (figure). Ongoing weekly data cleaning and accuracy checks were performed with weekly data reports to SEED and BRIDGE management groups. CONCLUSION: The REDCap-based electronic data management system for BRIDGE and SEED allows for continuous data management and reporting to study leaders and to field workers, facilitating enrollment and retention, enhancing follow-up visit compliance, and facilitating rapid analysis and reporting of results.