Development and evaluation of a customized checklist to assess the quality control of disease registry systems of Tehran, the capital of Iran in 2021.

BACKGROUND: Clinical registries facilitate medical research by providing 'real data'. In the past decade, an increasing number of disease registry systems (DRS) have been initiated in Iran. Here, we assessed the quality control (QC) of the data recorded in the DRS established by Shahid Beheshti University of Medical Sciences in Tehran, the capital city of Iran, in 2021. METHODS: The present study was conducted in two consecutive qualitative and quantitative phases and employed a mixed-method design. A checklist containing 23 questions was developed based on a consensus reached following several panel group discussions, whose face content and construct validities were confirmed. Cronbach's alpha was calculated to verify the tool's internal consistency. Overall, the QC of 49 DRS was assessed in six dimensions, including completeness, timeliness, accessibility, validity, comparability, and interpretability. The seventy percent of the mean score was considered a cut-point for desirable domains. RESULTS: The total content validity index (CVI) was obtained as 0.79, which is a reasonable level. Cronbach's alpha coefficients obtained showed acceptable internal consistency for all of the six QC domains. The data recorded in the registries included different aspects of diagnosis/treatment (81.6%) and treatment quality requirements outcomes (12.2%). According to the acceptable quality cut-point, out of 49 evaluated registries, 48(98%), 46(94%), 41(84%), and 38(77.5%), fulfilled desirable quality scores in terms of interpretability, accessibility, completeness, and comparability, however, 36(73.5%) and 32(65.3%) of registries obtained the quality requirement for timeliness and validity, respectively. CONCLUSION: The checklist developed here, containing customized questions to assess six QC domains of DRSs, provided a valid and reliable tool that could be considered as a proof-of-concept for future investigations. The clinical data available in the studied DRSs fulfilled desirable levels in terms of interpretability, accessibility, comparability, and completeness; however, timeliness and validity of these registries needed to be improved.

Pancreatic Cancer in Iran: an Epidemiological Review.

PURPOSE: Pancreatic cancer is the seventh cause of death in men in the world and also is one of the most common malignancies worldwide with poor prognosis. Due to the lack of epidemiological aspects of pancreatic cancer in Iran, this study aimed to investigate the epidemiological aspects of pancreatic cancer in Iran. METHODS: In February 2019, A search was conducted with the keywords "Pancreatic Neoplasm," "Pancreas Neoplasms," "Cancer of Pancreas," "Pancreas Cancer," "Pancreatic Cancer," "Cancer of the Pancreas," and "Iran" in their title or abstract and MeSH. The databases of Medline, Web of Science, Scopus, SID, IranMedex, and Google Scholar were searched. The title and abstract of the papers were reviewed, and articles that addressed the epidemiological aspects of pancreatic cancer were included; in total, 20 full papers were reviewed. RESULTS: According to studies, the incidence and mortality rate of pancreatic cancer is steadily increasing with age. Actually, men are more likely to develop this carcinoma than women. Smoking, aging, and lifestyle changes are the most important risk factors for pancreatic cancer in Iran. Due to the lack of initial symptoms or a specific marker for early diagnosis of pancreatic cancer, this cancer is detected lately and therefore low survival rate is observed. CONCLUSION: Mortality and incidence of pancreatic cancer is increasing in Iran. Pancreatic cancer is more common in men than women. Based on the results of this study, pancreatic cancer depends largely on the lifestyle. Survival of pancreatic cancer is low in untreated patients.