Abstract
OBJECTIVES: The objective of the study is to develop the International Spinal Cord Injury (SCI) Fracture History Extended Data Set within the framework of the International SCI Data Sets to permit consistent collection and reporting of fracture history in the SCI population. METHODS: The International SCI Fracture History Extended Data Set has been developed by a working group. The initial data set was open for 2 months for discussion and was revised based on suggestions from members of the International SCI Data Sets Committee, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, American Spinal Injury Association (ASIA) Board, other interested organizations, societies, and individual reviewers. The data set was also posted for 2 months for comments on ISCoS's and ASIA's websites. RESULTS: The final data set contains questions on fractures after SCI. Because the information may be collected at any time, the date of data collection is important to capture relative to the time lapsed after SCI. The data set includes information on fracture history (location, etiology, treatment, complications for each fracture event), osteoporosis treatment (current and past use), bone measures by quantitative computed tomography (6 variables), and body composition (7 variables). The complete instructions for data collection and the data sheet itself are freely available on the ISCoS website (https://cdn.ymaws.com/www.iscos.org.uk/resource/resmgr/fracture/iscieds_fracture_1.pdf). CONCLUSION: The data set proposes to collect information on bone loss, other factors potentially predictive of fracture risk, and fracture in persons with SCI to guide clinical management and future research activities.