بروز بيماري بتا تالاسمي ماژور و علل آن پس از شروع برنامه كنترل و پيشگيري تالاسمي ماژور در شهرستان هاي تابعه دانشگاه علوم پزشكي اصفهان

Incidence rate of major beta-thalassemia and study of its causes after prevention and control program of thalassemia in Isfahan Province

Background and Objectives The prevention and control program of major beta-thalassemia disease is one of the most important preventive programs in the Iranian health system which has been implemented for more than one decade. This study aimed to assess the outcomes of this program in districts of Isfahan province and discuss new disease cases (1997-2007). Materials and Methods The method of this study is descriptive and cross-sectional. Patients born after the onset of the screening program (Mar-1997) in 20 districts of Isfahan province were included in data collection. Provincial reference clinic for thalassemia was responsible for data collection conducted through completion of questionnaires. The data were analyzed by SPSS 11. Results It was revealed that 47 cases (49%) out of 96 were born to the unscreened couples who were unaware of their carrier state. Out of the former, 43 couples had been married before the onset of screening program. The parents of 34 cases (35.4%) had been screened in the program and 15 cases (15.6%) were born to the unscreened couples with the previous experience of delivery of thalassemia-affected infants. Conclusions Support and revival of genetic counseling teams that regularly receive training, follow up of suspicious thalassemia cases or carrier couples, information dissemination about prevention program of thalassemia in the community, establishment of valid registry systems for present patients and continuous referral of their parents to health centers for surveillance and service delivery to foreign refugees are the most important points that the findings of this study consider significant.