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Abstract Background In the last ten years, many countries have started to develop constructive systems for registering common diseases and cancers. In this research, we intended to determine and identify the minimum data set (MDS) required for the design of the oral and lip squamous cell cancer registration system in Iran. Methods and material At first, primary information elements related to disease registries were extracted using scientific papers published in reliable databases. After reviewing the books, related main guidelines, and 42 valid articles, the initial draft of a researcher-made questionnaire was compiled. To validate the questionnaire, two focus group meetings were held with 29 expert panel members. The final version of this questionnaire was prepared by extracting different questions and categories and receiving numerous pieces of feedback from specialists. Lastly, a final survey was conducted by the experts who were present at the previous stage. Results Out of 29 experts participating in the study, 17 (58.62%) were men and 12 (40.37%) were women. The age range of experts varies from 34 to 58 years. One hundred-fourteen items, which are divided into ten main parts, were considered the main information elements of the registry design. The main minimum data sets have pertained to the demographic and clinical information of the patient, information related to the consumed drugs, initial diagnostic evaluations of the patient, biopsy, tumor staging at the time of diagnosis, clinical characteristics of the tumor, surgery, histopathological characteristics of the tumor, pathologic stage classification, radiotherapy details, follow-up information, and disease registry capabilities. The distinctive characteristics of the oral and lip squamous cell cancer registry systems, such as the title of the disease registration programme, the population being studied, the geographic extent of the registration, its primary goals, the definition of the condition, the technique of diagnosis, and the kind of registration, are all included in a model. Conclusion The benefits of designing and implementing disease registries can include timely access to medical records, registration of information related to patient care and follow-up of patients, the existence of standard forms and the existence of standard information elements, and the existence of an integrated information system at the country level. |
