Establishment of Iran Musculoskeletal Tumor Registry: A Study Protocol and Lessons Learned from Implementation and the Pilot Phase

BACKGROUND: The number of available musculoskeletal tumor registries is relatively small. We developed a registry system focused on the clinical aspects of musculoskeletal tumors to improve quality of care indexes through the development of updated national protocols. In this study, we describe our protocol, challenges, and the data collected during the implementation of the registry system in a single-specialty orthopedic center in Iran. METHODS: Three main malignant bone tumors, including osteosarcoma, Ewing sarcoma, and chondrosarcoma, were included in the registry. After establishing a steering committee, we defined the minimum data set based on a literature review and suggestions from an expert panel. Accordingly, the data collection forms and the web-based software were developed. The collected information was categorized into 9 classes, including demographics, socioeconomic data, signs and symptoms, past medical history, family history, laboratory tests, tumor characteristics, primary treatment, and follow-up. Data collection was performed both retrospectively and prospectively. RESULTS: Until September 21, 2022, a total of 71 patients were registered (21 patients prospectively and 50 patients retrospectively) and consisted of 36 (50.7%) cases of osteosarcoma, 13 (18.3%) cases of Ewing sarcoma, and 22 (31%) cases of chondrosarcoma. The implementation of the registry demonstrated promising data regarding the tumor characteristics, delay patterns, and socioeconomic status of the patients. CONCLUSION: The main lessons learned were to develop a monitoring system to make sure that the new staff is adequately trained for the registration process as well as avoid the inclusion of time-consuming useless data in the minimum data set.