Epidemiological Investigation of a Twenty-Year Major β-Thalassemia Surveillance in Kerman, Iran

Background & Aims of the Study: Since beta-thalassemia is the most commonly inherited disease in Iran, its preventive and controlling programs are considered vitally important in the healthcare system. This study was conducted to investigate the incidence rate and epidemiology of major beta-thalassemia (MBT) over the last twenty years in Kerman, Iran. Materials and Methods: This cross-sectional study, as a kind of health system research, carried was out on all patients with beta-thalassemia (born from March 1998 to March 2018) registered in Kerman Health Center. The data, extracted from the national records of genetic diseases, were analyzed in SPSS software (version 16) using Fisher's exact test. Results: Based on the results of the present study, the incidence rate of MBT was calculated at 0.99 cases per 10,000 live births. According to this result, 29 subjects with MBT were born from 1998 to 2018. The most important cause of thalassemia was determined as non-identification of thalassemia minor in carrier couples and their lack of awareness about their complication (62%). The other cause was the non-cooperation of screened carrier couples in attending prenatal diagnosis (20.7%). It was revealed that in 23 MBT cases, the parents were relatives (79.3%). The diagnosis of 62% of patients had been made before they turned one year. Conclusion: It is recommended that the following measures been adopted to avoid MBT incidence: strengthening the care team, cooperating with gynecologists in identifying pregnant women suspected of having thalassemia minor in the first weeks of pregnancy and referring them to genetic counseling centers for condition determination, educating families and changing carrier couples attitudes toward abortion, monitoring and improving screening laboratories, and implementing public education programs for specific groups.