The minimum data set for goiter disorder in Iran

Goiter, primarily caused by iodine deficiency, remains one of the most common endocrine disorders globally. The absence of standardized and structured data hampers effective monitoring, diagnosis, and management. This study aimed to develop a minimum data set (MDS) for goiter to facilitate accurate and consistent data collection and support the development of a national registry system for improved healthcare delivery.

A cross-sectional study was conducted in Kerman, Iran, from October 2023 to May 2024, in three phases. In the first phase, relevant data elements were extracted from the literature and existing records. In the second phase, a checklist was designed based on the extracted elements. In the third phase, a two-round Delphi method was conducted with a panel of domain experts, including endocrinologists and health informatics specialists, to validate and finalize the proposed MDS.

Initially, 57 data elements were identified across clinical and managerial categories. After the first Delphi round, 15 elements were approved. Following the second round, the final MDS was refined to 9 core elements that met the experts' consensus.

This study demonstrates that a carefully designed MDS, developed with input from both clinical and informatics experts, can significantly enhance the quality and consistency of goiter-related data. It supports better planning, resource allocation, and clinical outcomes while addressing existing challenges such as poor registration systems and lack of standardized documentation.