International Spinal Cord Society (ISCoS) database: Asian Spinal Cord Network (ASCoN) Pilot Project [IDAPP]

Global mapping project of ISCoS for traumatic spinal cord injury (T-SCI) highlighted paucity of data from low and middle income countries (LMICs). Recognizing this gap, IDAPP study of one year duration was proposed as the first step to develop an International SCI database.

Primary objective was to assess database variables, processes involved and web platform for their suitability with a view to provide guidance for a large scale global project. Secondary objective was to capture demographic and selected injury/safety data on patients with T-SCI with a view to formulate prevention strategies.

Nine centers from Asia.

All patients with T-SCI admitted for first time were included. International SCI Core Data Set and especially compiled Minimal Safety Data Set were used as data elements. Questionnaire was used for feedback from centers.

Results showed relevance and appropriateness of processes, data variables and web platform of the study. Ease of entering and retrieval of data from web platform was confirmed. Cost of one year IDAPP study was USD 7780. 975 patients were enrolled. 790 (81%) were males. High falls (n = 513, 52%) as a cause and complete injuries (n = 547, 56%) were more common. There was a higher percentage of thoracic and lumbar injuries (n = 516, 53%).

The study confirms that establishing the SCI database is possible using the variables, processes and web platform of the pilot study. It also provides a low cost solution. Expansion to other centers/regions and including non-traumatic SCI would be the next step forward.