Developing a National Minimum Data Set for Kawasaki Disease Registry in Iran

Abstract

BackgroundKawasaki Disease is an acute and self-limited systemic inflammatory and febrile illness, which is the most common cause of acquired heart disease in children in developed countries. The incidence of KD in Asian countries is high. But, data is not available from the Middle East. So, the aim of this study was to develop an MDS to set up a national registry for KD to estimate the burden of disease in Iran.Materials and MethodsThis cross-sectional and descriptive study was conducted in 2020. Literature review, data collection from patients medical records, and expert panel approach were used to design this MDS. Data elements with a Content Validity Ratio (CVR) of more than 0.56 were selected as the MDS of the registry.ResultsOverall, 99 data elements were recognized. Of which, 51 and 48 data elements were verified and rejected, respectively. Moreover, 17 data elements were added as required by experts. Eventually, 68 data elements were chosen as the MDS of the national KD registry of IRAN; of which, 17 and 51 data elements were classified as administrative and clinical data, respectively.ConclusionsThese precise, integrated, and comprehensive developed data elements and the national KD registry will lead to effective disease management and thus, improve the quality of care and, consequently, improve public health.

Designing a minimum data set for the information management system (registry) of spinal canal stenosis: An applied‐descriptive study

“…In the class of demographic data, eight data elements had been proposed, all being approved by the experts. The only difference between this class with other similar studies in Iran [16][17][18][19]38 on proposed data elements was the passport number of foreign citizens, due to referral of patients from Iraq and Afghanistan for treating spinal canal stenosis in Iran. Considering the importance of registering socioeconomic data in patients with spinal canal stenosis, for the socioeconomic data class, seven data elements were proposed, all being approved by the experts except for ethnicity.…”

“…In other words, MDS has a positive effect on the precise and comprehensive presentation of information on medical history, facilitation of healthcare plans, and healthcare provision quality enhancement as well as the duration of hospitalization and quality of life 16 . Precise and coherent data in MDS are used for evaluating the incidence, prevalence, and burden of the disease at both national and international levels 17 . MDS development is an important prerequisite to the collection of standards, integrated, and identical data about a disease.…”

“…MDS development is an important prerequisite to the collection of standards, integrated, and identical data about a disease. MDS provides high‐quality information for care providers by creating a national database 17 . MDS can be used for collection and standardization of the data.…”

“… 16 Precise and coherent data in MDS are used for evaluating the incidence, prevalence, and burden of the disease at both national and international levels. 17 MDS development is an important prerequisite to the collection of standards, integrated, and identical data about a disease. MDS provides high‐quality information for care providers by creating a national database.…”

Epidemiological data of national Kawasaki disease registry in Iran, 2007–2019

“…This registration system has been designed to record data from KD and acute rheumatic fever patients in Iran in 2018. Data for the minimum dataset (MDS) in the registry program about KD had been obtained from a combination of literature review, data collection from patients' medical records, and an expert panel approach ( 16 ).…”