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Newborn screening for sickle cell disease in the Republic of Benin
M C Rahimy1, A Gangbo, G Ahouignan
1National Sickle Cell Disease Center, Faculty of Health Sciences, University of Abomey-Calavi, Cotonou, Republic of Benin, West Africa. mrahimy@bj.refer.org
Insights
A tailored strategy for newborn screening and follow-up for sickle cell disease (SCD) in Benin significantly improved outcomes. This approach reduced under-five mortality by tenfold compared to national rates.
Area of Science:
- Public Health
- Genetics
- Pediatrics
Background:
- Sickle cell disease (SCD) presents a significant health burden in many African nations.
- Existing screening and follow-up programs often face challenges due to socioeconomic and cultural factors.
- A context-specific approach is crucial for effective SCD management in Sub-Saharan Africa.
Purpose of the Study:
- To design and implement a neonatal screening strategy for sickle cell disease (SCD).
- To ensure effective enrollment and long-term follow-up for affected newborns.
- To adapt the program to the specific socioeconomic, health, and cultural context of an African setting.
Main Methods:
- Implementation of a strategy in two major maternity services in Cotonou, Republic of Benin.
- Training midwives to identify at-risk pregnancies and provide information on newborn screening.
- Emphasis on voluntary demand for screening and enrollment in a comprehensive follow-up program.
Main Results:
- Approximately 3000 pregnant women were studied, with 79.5% of informed, at-risk women opting for offspring screening.
- 85.2% of newborns testing positive for SCD were enrolled in the follow-up program.
- Over 80% of enrolled infants remained in follow-up after five years, with a significantly reduced under-five mortality rate (15.5 per 10,000).
Conclusions:
- The developed strategy is highly relevant and effective within the specific African context.
- Tailored public health interventions can significantly improve outcomes for genetic diseases like SCD.
- This model demonstrates the feasibility of successful neonatal screening and comprehensive care in resource-limited settings.
Aims:
To develop a strategy for neonatal screening of sickle cell disease (SCD) and effective enrollment of affected neonates in a comprehensive follow-up programme adapted to the socioeconomic conditions, health structures and cultural background of an African setting.
Methods:
The strategy implemented at the two largest maternity services of Cotonou, the economic capital of the Republic of Benin, involves a team of specifically trained midwives, first to identify pregnant women at risk, and second to provide active and repeated information and sensitisation to these women to encourage voluntary demand for newborn screening and enrollment in the follow-up programme.
Results:
Among the consecutive pregnant women studied (about 3000), 79.5% of the informed women at risk for fetal SCD asked for testing of their offspring, 85.2% of the newborns who tested positive were enrolled in the programme, and more than 80% were still being followed up after 5 years. The under-five mortality rate in this series was 15.5 per 10,000, a figure that is 10 times lower than the general rate recorded in the Republic of Benin.
Conclusions:
The results demonstrate that this specifically tailored strategy is relevant to this setting, given the unique conditions of this African country.
