Evaluation of the National Prevention Program in Iran, 2007–2009: the Accomplishments and Challenges with Reflections on the Path Ahead

Abstract

β-Thalassemia major (β-TM) is an inherited disease and efforts have been made in several countries to reduce the number of affected births. In the present study, we aimed to evaluate the Iranian thalassemia prevention program, considered to be an important program in the region. The time period of the present study ranges from 2007–2009, during which new thalassemic births and the relevant causes were evaluated throughout the country. A cross-sectional analytical study was conducted at the Iranian Blood Transfusion Organization (IBTO), Tehran, Iran. A questionnaire was forwarded to all blood centers of the IBTO so as to obtain information about the new cases of thalassemia and the causes of these thalassemic births. Provincial thalassemia societies also received the questionnaires so that screening and prenatal diagnosis (PND) errors would be recorded. The results showed that 755 new thalassemia cases were born during 2007–2009 with the average fall in affected thalassemia births of 80.82%. The main cause of the new births was attributed to unregistered “timeless religious marriages” based on the conventions of the Sunni community which accounted for 43.17% of all new cases mainly having occurred in Sistan & Baluchestan Province. Not using PND was evaluated to be another main cause. Although the prevention program has led to a great reduction in thalassemic births, new measures are required, including research on how to make the program compatible with social and economic conventions and norms of Sistan & Baluchestan Province. The province of Kohgiluyeh Boyer Ahmad also needs to be revisited in terms of the program efficacy.

• Causes of new thalassemia cases
• fall in affected birth rates
• Iranian Thalassaemia Prevention Programme
• prenatal diagnosis
• prevention of thalassemia
• thalassemia

Acknowledgements

We would like to express our deepest gratitude to Mrs. Sakineh Yousefi Darestani, Mrs. Zahra Eshaghi, Mrs. Tahereh Hamzeh, Mrs. Maryam Mollaie, Mrs. Bahareh Ahmadinezhad and Mr. Ali Shahbazi (all at IBTO, Tehran, Iran) for their valuable assistance. In addition, we would like to thank all managers of provincial blood transfusion centers and volunteers in provincial thalassemia societies in Iran for helping us gather the new cases and relevant information. Our thanks also go to Dr. Kourosh Etemad and Dr. Ashraf Samavat (GO-MOH, Tehran, Iran) for furnishing us with carrier rates in Iran.