Designing a data set for registry of patients with adrenal insufficiency

Abstract

Introduction: Adrenal insufficiency is one of the most important life-threatening disorders with serious complications. Establishing a standard data element can provide earlier diagnosis, timely treatment, and follow-up to reduce disease crisis. Objectives: This study aimed to draft a data set for the registry of patients with adrenal insufficiency. Patients and Methods: The present cross-sectional study developed data elements for the registry of patients with adrenal insufficiency using a two-round Delphi technique of 2015. The informational elements selected by more than 75% of participants with a value of "very high" and "high" were accepted as the main elements. Results: The final data set included four main groups, 15 subclass and 114 data elements for the registry of patients with adrenal insufficiency. Our results have demonstrated that the primary data groups include administrative data; signs, symptoms, medical and family history data elements; paraclinical diagnostic data, treatment, and follow-up data to improve patient management. Conclusion: This study designed data set registry forms for patients with adrenal insufficiency using a standard method. Our finding indicated that, applying a uniform data set can provide better data management, patient care, and prevention of disease complications, especially in adrenal insufficiency disorder.