Medical Journal of the Islamic Republic Of Iran

en Establishment of Iran Musculoskeletal Tumor Registry: A Study Protocol and Lessons Learned from Implementation and the Pilot Phase Orthopedic Orthopedic Study Protocol Study Protocol 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.   Musculoskeletal tumor, Registry, Osteosarcoma, Ewing Sarcoma, Chondrosarcoma 294 301 http://mjiri.iums.ac.ir/browse.php?a_code=A-10-3409-2&slc_lang=en&sid=1 Khodamorad Jamshidi jamshidi_K@yahoo.com 200319475328460076674 200319475328460076674 Yes Bone and Joint Reconstruction Research Center, Department of Orthopedics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran Abolfazl Bagherifard bagherifd@gmail.com 200319475328460076675 200319475328460076675 No Bone and Joint Reconstruction Research Center, Department of Orthopedics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran Kazem Zendehdel kzendeh@tums.ac.ir 200319475328460076676 200319475328460076676 No Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran Ali Sharifi Kia Ali.sharifikia@gmail.com 200319475328460076677 200319475328460076677 No Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran Abbas Sheikhtaheri Sheikhtaheri.a@iums.ac.ir 200319475328460076678 200319475328460076678 No Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran Nasim Hashemi hashemi.nasim@tamin.ir 200319475328460076679 200319475328460076679 No Iranian Social Security Organization, Tehran, Iran Shimasadat Nahvizadeh Shimanahvi68@gmail.com 200319475328460076680 200319475328460076680 No Bone and Joint Reconstruction Research Center, Department of Orthopedics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran Alireza Mirzaei mirzaeialireza26@gmail.com 200319475328460076681 200319475328460076681 No Bone and Joint Reconstruction Research Center, Department of Orthopedics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran