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

Unlabelled: 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.

Methods: 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.

Results: 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.

Conclusion: 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.