First Report of the Electronic Registry of Patients with Beta Thalassemia Major in Mazandaran Province, Iran

Background and The electronic registry of patients with beta thalassemia major was developed in Thalassemia Research Center affiliated with Mazandaran University of Medical Sciences in order to provide an accurate database for researchers and health planners. This study reports the condition of patients registered in Mazandaran province till summer 2016.
In this descriptive study, the following information was recorded in the registry system: epidemiologic data, clinical examination data, complications, routine laboratory test results, medications, new cases, and death. Descriptive statistics were used to summarize the data.
Until the summer 2016, 1053 patients including 500 (47.5%) males and 553 (52.5%) females were registered in 14 hospitals. These were half of the number of patients receiving care by the aforementioned University. Among the patients, 920 (87.4%) were transfusion dependent. Single patients included 54.2% (n= 571). The level of formal education was beyond high school in 29.8% (n= 314). Three hundred and fifty (33.2%) patients were employed. Splenectomy was done in 606 (58%) patients. Diabetes mellitus, hypoparathyroidism, and hypothyroidism were diagnosed in at least 12% (n= 120), 14.3% (n= 145), and 11% (n= 112), respectively. Cardiomyopathy was observed in 113 (11.2%) cases. The most common iron chelators medication was desferrioxamine, which was used alone (50.4%) or in combination with deferiprone (24.3%).
Current research showed that in spite of incompleteness of records at the electronic registry of patients with beta thalassemia major, a comprehensive electronic system could enhance the level of care provided for involved patients.