Databases for Research in Pediatric Acute Respiratory Distress Syndrome

Abstract

Problem Addressed?Observational data, either previously existing or gathered specifically for research, provide exciting opportunities to understand practice variation, generate hypotheses, test the feasibility of future clinical trials, and perform comparative effectiveness research. Pediatric acute respiratory distress syndrome (PARDS) provides a prototypical example of a disease state where our science can be furthered by using observational data in the form of research databases. Investigational Approach?Literature review. Results?There are several key issues that are important to consider in the creation of PARDS databases to inform future research and answer comparative effectiveness questions. They surround (1) time-sensitive measurements mandating careful annotations of key variables, (2) explicit methodology for ventilator-related variables, (3) explicit data to calculate outcome measures, (4) granularity of data to handle dose-dependent questions, and (5) operational definitions of crucial comorbidities or other factors implicated in PARDS outcome. These areas must be explicitly handled in the ontologic framework of PARDS databases. Conclusions?In summary, there are many opportunities to use existing data to further our knowledge of PARDS. However, the aggregation of these data from previous studies, future studies, or existing electronic health care records must be done with careful consideration that the variables and data annotations are of adequate granularity and specificity to answer the questions we want to ask.