SpineData – a Danish clinical registry of people with chronic back pain

Abstract

Peter Kent,1 Alice Kongsted,1,2 Tue Secher Jensen,2,3 Hanne B Albert,4 Berit Schiøttz-Christensen,3 Claus Manniche3 1Department of Sports Science and Clinical Biomechanics, University of Southern Denmark, Odense, Denmark; 2Nordic Institute of Chiropractic and Clinical Biomechanics, Odense, Denmark; 3Research Department, Spine Centre of Southern Denmark, Hospital Lillebaelt, Institute of Regional Health Research, University of Southern Denmark, Middelfart, Denmark; 4The Modic Clinic, Odense, Denmark Background: Large-scale clinical registries are increasingly recognized as important resources for quality assurance and research to inform clinical decision-making and health policy. We established a clinical registry (SpineData) in a conservative care setting where more than 10,000 new cases of spinal pain are assessed each year. This paper describes the SpineData registry, summarizes the characteristics of its clinical population and data, and signals the availability of these data as a resource for collaborative research projects. Methods: The SpineData registry is an Internet-based system that captures patient data electronically at the point of clinical contact. The setting is the government-funded Medical Department of the Spine Centre of Southern Denmark, Hospital Lillebaelt, where patients receive a multidisciplinary assessment of their chronic spinal pain. Results: Started in 2011, the database by early 2015 contained information on more than 36,300 baseline episodes of patient care, plus the available 6-month and 12-month follow-up data for these episodes. The baseline questionnaire completion rate has been 93%; 79% of people were presenting with low back pain as their main complaint, 6% with mid-back pain, and 15% with neck pain. Collectively, across the body regions and measurement time points, there are approximately 1,980 patient-related variables in the database across a broad range of biopsychosocial factors. To date, 36 research projects have used data from the SpineData registry, including collaborations with researchers from Denmark, Australia, the United Kingdom, and Brazil. Conclusion: We described the aims, development, structure, and content of the SpineData registry, and what is known about any attrition bias and cluster effects in the data. For epidemiology research, these data can be linked, at an individual patient level, to the Danish population-based registries and the national spinal surgery registry. SpineData also has potential for the conduct of cohort multiple randomized controlled trials. Collaborations with other researchers are welcome. Keywords: back pain, neck pain, thoracic pain, registries, prognosis, outcome measures, quality of care