OBJECTIVES: To synthesize evidence on sickle cell disease (SCD) prevalence in the Middle East.

METHODS: A systematic literature review was conducted in September 2023 and updated in May 2024. Proceedings of key hematological conferences were also performed. Included studies must have reported on the prevalence of SCD in the Middle East.

RESULTS: Nine studies provided data on the prevalence of SCD in the Middle East. The Global Burden of Disease (GBD) provided the most comprehensive data, with prevalence ranging from 167/100,000 in 2000 to 97/100,000 in 2021. As of 2021, prevalence of SCD was lowest in Kuwait, Lebanon, and UAE (<50/100,000) and highest in Bahrain, Saudi Arabia, and Oman (>250/100,000). More than one study provided estimates for Bahrain, Jordan, Oman, and Saudi Arabia. In Bahrain, a cohort among eleventh grade students, 1999-2008, showed that among 60,424 students, 1.1% had SCD; whereas, a modelling study showed a prevalence of 949/100,000 and 618/100,000 in 2000 and 2021 in the general population. In Jordan, prevalence, 2009-2018, among patients referred to a single-center (0.73%) was similar to a modelling study in the general population (72/100,000 and 65.4/100,000 in 2000 and 2021). In Oman, 0.47% of patients at a single-center, 2004-2006, had SCD; whereas, a modelling study showed a prevalence of 289/100,000 and 273/100,000 in 2000 and 2021 in the general population. In Saudi Arabia, a pre-marital genetic screening program showed prevalence of 270/100,000 in 2004 and 240/100,000 in 2009.

CONCLUSIONS: Prevalence of SCD in the Middle East is high compared to other parts of the world. Differences in data sources and methodology have created challenges in understanding the prevalence in the region. Continued implementation of newborn screening programs and registries will allow for more accurate estimates and thus optimized care for individuals with SCD.