Traumatic brain injury (TBI) is one of the major public health concerns worldwide. Developing a TBI registry could facilitate characterizing TBI, monitoring the quality of care, and quantifying the burden of TBI by collecting comparable and standardized epidemiological and clinical data. However, a national standard tool for data collection of the TBI registry has not been developed in Iran yet. This study aimed to develop a national minimum data set (MDS) for a hospital-based registry of patients suffering from TBI in Iran.
The MDS was designed in two phases, including a literature review and a Delphi study with content validation by an expert panel. After the literature review, a comprehensive list of administrative and clinical items was obtained. Through a two-round e-Delphi approach conducted by invited experts with clinical and research experience in the field of TBI, the final data elements were selected.
An MDS of TBI was assigned to two parts: administrative part with five categories including 52 data elements, and clinical part with nine categories including 130 data elements.
For the first time in Iran, we developed an MDS specified for TBI consisting of 182 data elements. The MDS would facilitate implementing a TBI’s national level registry and providing essential, comparable, and standardized information.