Background: In the Dutch International Spinal Cord Injury (SCI) Data Sets project, we translated all International SCI Data Sets available in 2012 and created a Dutch SCI Database (NDD). Objective: To describe the number of included patients and completeness of the NDD, and to use the NDD to provide a profile of people with traumatic SCI (T-SCI) and non-traumatic SCI (NT-SCI) in the Netherlands. Methods: The NDD includes patients admitted for their first inpatient rehabilitation after onset of SCI to 1 of the 8 rehabilitation centers with a specialty in SCI rehabilitation in the Netherlands. Data of patients admitted in 2015 were analyzed. Results: Data for 424 patients were available at admission; for 310 of these patients (73.1%), discharge data were available. No significant differences were found between patients with and without data at discharge. Data were nearly complete (>90%) for lower urinary tract, bowel, pain, and skin. Data on sexual function has the lowest completion rate. Complete neurological and functional data were available for 41.7% and 38%, respectively. Most patients were male (63.4%), had NT-SCI (65.5%), and had incomplete SCI (58.4% D). Patients with T-SCI differed from patients with NT-SCI on most characteristics, and they stayed considerably longer in the rehabilitation center (112 days vs 65 days, p < .001). Place of discharge was not different between both groups. Conclusion: With the NDD, we collect important data on the majority of Dutch SCI patients, although much work needs to be done to improve the completeness of the data collection.
Keywords: database; epidemiology; registry; spinal cord injuries.