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.

Highlights

  • Kawasaki disease (KD), an acute and self-limited systemic inflammatory and febrile illness occurs generally in children under 5 years old [1, 2]

  • A literature review was carried out to specify all possible data elements to be included in the final minimum data set

  • We carried out a systematic review of ISI Web of Science, PubMed, Scopus, Google Scholar, and Persian databases to recognize all References related to the minimum data set (MDS) of KD which were published until February 2020 (Figure 1)

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Summary

Introduction

Kawasaki disease (KD), an acute and self-limited systemic inflammatory and febrile illness occurs generally in children under 5 years old [1, 2]. Rash, cervical lymphadenopathy, conjunctivitis, oral changes, extremity changes, skin and mucous membrane infection are its major symptoms [2, 4]. It can seriously affect the heart and its coronary arteries [5, 6]. Almost all deaths in patients with KD are due to secondary heart disease or its consequences such as myocardial infarction (MI), chest pain, arrhythmia, and sudden death [5]. Kawasaki 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.

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