A pilot study to evaluate cross-sectional and longitudinal supplemental data collection on medical and nonmedical costs of muscular dystrophy
Conway, K. M., Neyaz, T., & Romitti, P. A., (2020). A pilot study to evaluate cross-sectional and longitudinal supplemental data collection on medical and nonmedical costs of muscular dystrophy. In Sage Research Methods Cases: Medicine and Health. SAGE Publications, Ltd.,
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This case study describes the design and implementation of a small-scale, or pilot, study for collecting cross-sectional and longitudinal supplemental data on medical and nonmedical costs associated with selected muscular dystrophies. We recruited individuals with a confirmed diagnosis of Duchenne and Becker or myotonic muscular dystrophies identified by the population-based Muscular Dystrophy Surveillance, Tracking, and Research Network. We later analyzed our pilot study approach for the purpose of identifying successful components for future large-scale data collection. Readers are expected to learn about the challenges of designing and implementing a pilot study. Our evaluation included recruitment success, cross-sectional versus longitudinal data collection, and response patterns.