Jamshidi Khodamorad, Bagherifard Abolfazl, Zendehdel Kazem, Sharifi Kia Ali, Sheikhtaheri Abbas, Hashemi Nasim, Nahvizadeh Shimasadat, Mirzaei Alireza
Bone and Joint Reconstruction Research Center, Department of Orthopedics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.
Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran.
Med J Islam Repub Iran. 2023 Apr 12;37:37. doi: 10.47176/mjiri.37.37. eCollection 2023.
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.
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.
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.
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.
现有的肌肉骨骼肿瘤登记处数量相对较少。我们开发了一个专注于肌肉骨骼肿瘤临床方面的登记系统，以通过制定最新的国家方案来提高医疗质量指标。在本研究中，我们描述了我们的方案、面临的挑战以及在伊朗一家单一专科骨科中心实施登记系统期间收集的数据。
登记处纳入了三种主要的恶性骨肿瘤，包括骨肉瘤、尤因肉瘤和软骨肉瘤。在成立指导委员会后，我们根据文献综述和专家小组的建议确定了最小数据集。据此，开发了数据收集表和基于网络的软件。收集到的信息分为9类，包括人口统计学、社会经济数据、体征和症状、既往病史、家族史、实验室检查、肿瘤特征、初始治疗和随访。数据收集采用回顾性和前瞻性两种方式。
截至2022年9月21日，共登记了71例患者（前瞻性登记21例，回顾性登记50例），其中骨肉瘤36例（50.7%），尤因肉瘤13例（18.3%），软骨肉瘤22例（31%）。登记处的实施展示了关于患者肿瘤特征、延误模式和社会经济状况的有前景的数据。
主要经验教训是建立一个监测系统，以确保新员工在登记过程中得到充分培训，并避免在最小数据集中纳入耗时的无用数据。
