Data Set Instrument for Epidemiologic Studies of Spinal Cord Injury: Traumatic and Non-traumatic

Spinal cord injury (SCI), both traumatic and non-traumatic, represents a substantial global health burden, with varying incidence and mortality rates. Despite the availability of multiple data collection tools, there is no standardized, comprehensive instrument addressing the full spectrum of SCI for epidemiologic research. This project introduces a data set for SCI epidemiologic research, developed on the Research Electronic Data Capture (REDCap) platform, to enhance comparability and facilitate data exchange.

The data set was developed through extensive literature reviews and expert panel consultations. It integrates elements from the National SCI Registry of Iran (NSCIR-IR) for traumatic SCI and the International Spinal Cord Injury Data Sets for non-traumatic SCI. Modifications were made to ensure comprehensive coverage and adaptability for epidemiologic studies. The REDCap platform was utilized for its flow-based data entry design, enhancing usability and relevance.

The finalized instrument contains 78 variables spanning demographics, injury characteristics, hospitalization data, medical history, interventions, and patient outcomes. It incorporates flow-based logic to streamline data entry and accommodate the specific needs of both traumatic and non-traumatic SCI cases. The data set is available for online use in the REDCap Shared Library.

This standardized, modifiable data instrument fills a critical gap in SCI research, enabling consistent data collection for both traumatic and non-traumatic SCI. Its adoption can facilitate comparative analyses and inform healthcare strategies globally.