Purpose: 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.
Methods: The MDS was designed in 2 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.
Results: A MDS of TBI was assigned to 2 parts: administrative part with 5 categories including 52 data elements, and clinical part with 9 categories including 130 data elements.
Conclusion: For the first time in Iran, we developed a 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.
Keywords: Data systems; Registries; Traumatic brain injuries.
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