Adopting common data elements (CDEs) for the National Trauma Research Repository (NTRR): the results of an outcome, outcome measures, and rehabilitation Delphi Survey
Kevin M Schuster, Ashley N Moreno, Dagmar Amtmann, Jill Marie Cancio, John Chovanes, Adele Doperalski, Eric Elster, Joseph T Giacino, Kirby Robert Gross, Juan Pablo Herrera-Escobar, Karen J Kowalske, Ingrid Parry, Jeffrey C Schneider, Olga VolkIntroduction
The National Trauma Research Repository (NTRR) serves as the central warehouse for trauma clinical research data that result from military and civilian trauma research. An effort to enhance the NTRR was undertaken through the identification and integration of common data elements (CDEs). CDEs will improve usability for primary investigators and allow for enhanced secondary analysis and combing of NTRR archived studies. A consensus-driven approach was used to review established data elements and recommend trauma basic CDEs for the outcomes and rehabilitation environments of care for inclusion in the NTRR data dictionary.
Methods
A multidisciplinary workgroup located and reviewed data dictionaries, codebooks, data collection forms, and published articles for outcome measurement instruments and individual outcome and rehabilitation data elements. Three rounds of a Delphi Survey were completed, and monthly meetings with the workgroup were conducted. Consensus during the Delphi Survey was identified with an 80% agreement threshold.
Results
Fifteen sources were reviewed for outcome measurement instruments, 39 measurement instruments were presented for consideration in the Delphi Survey, and 12 instruments (28%) reached consensus for inclusion in the NTRR data dictionary. Seventeen sources were reviewed for individual outcome data elements, 55 data elements were included in the Delphi Survey, and 45 data elements reached consensus for inclusion. Eleven sources were reviewed for rehabilitation data elements. Of the 41 rehabilitation data elements identified and included in the Delphi, 17 data elements reached consensus for inclusion.
Discussion
This workgroup selected outcome measurement instruments, outcome CDEs, and rehabilitation CDEs for inclusion in the NTRR data dictionary as basic CDEs. Next steps include disseminating these elements, integrating their use in trauma studies, and tracking the use and usability of these instruments and CDEs.
Level of evidence
VII.