Defining a Core Data Set for Registry of Esophageal Atresia in the Northwest of Iran

Defining the core data set is the main step for establishing a registry system. The aim of this study was to define the core data set for the registry of esophageal atresia in the northwest of Iran.

First, the preliminary list of data elements was extracted from the related registries of other countries, as well as from the literature. Then, a group of multidisciplinary experts was asked to score the tabulated list of data elements in terms of their importance using a 5-point Likert scale through a dual-round Delphi technique. Availability of data was assessed through a medical record review of 410 patients with esophageal atresia who had been hospitalized between March 2006 and March 2016 in Tabriz Children's Hospital.

The main classes of data were defined, including maternal information, patient demographics, clinical information, complications, and follow-up data. Thirty-two of 51 data elements (the core data elements) had 100% availability. Demographic data were completely available for 60% of the data elements. For clinical data, the availability rate was above 75%, while for complications and follow-up, it was 100% (except for the weight and height). In the category of maternal data, no data was available on the genetic screening and amniocentesis.

This study presents the core data set required for establishing an esophageal atresia registry in the northwest of Iran. A considerable number of identified cases and high availability of patient data indicated the feasibility of establishing the first esophageal atresia registry in the area.