Clinical Breast Cancer Registry of IR. Iran (CBCR-IR):Study Protocol and First Results

BACKGROUND: Breast cancer (BC), as a significant global health problem, is the most common cancer in women. Despite the importance of clinical cancer registries in improving the quality of cancer care and cancer research, there are few reports on them from low- and middle-income countries. We established a multicenter clinical breast cancer registry in Iran (CBCR-IR) to collect data on BC cases, the pattern of care, and the quality-of-care indicators in different hospitals across the country.METHODS: We established a clinical cancer registry in 12 provinces of Iran. We defined the organizational structure, developed minimal data sets and data dictionaries, verified data sources and registration processes, and developed the necessary registry software. During this registry, we studied the clinical characteristics and outcomes of patients with cancer who were admitted from 2014 onwards.RESULTS: We registered 13086 BC cases (7874 eligible cases) between 1.1.2014 and 1.1.2022. Core needle biopsy from the tumor (61.25%) and diagnostic mammography (68.78%) were the two most commonly used diagnostic methods. Stage distribution was 2.03% carcinoma in situ, 12% stage I, 44.65% stage II, 21.32% stage III, and 4.61% stage IV; stage information was missing in 1532 patients (19.46%). Surgery (95.01%) and chemotherapy (79.65%) were the most common treatments for all patients.CONCLUSION: The information provided by this registry can be used to evaluate and improve the quality of care for BC patients. It will be scaled up to the national level as an important resource for measuring quality of care and conducting clinical cancer research in Iran.