Newborn screening for sickle cell disease: an innovative pilot program to improve child survival in Dar es Salaam, Tanzania

Abstract

Background Sickle cell disease (SCD) is a recognized cause of childhood mortality. Tanzania has the fifth highest incidence of SCD (with an estimated 11 000 SCD annual births) worldwide. Although newborn screening (NBS) for SCD and comprehensive healthcare have been shown to reduce under-5 mortality by up to 94% in high-income countries such as the USA, no country in Africa has maintained NBS for SCD as a national health program. The aims of this program were to establish and evaluate NBS-SCD as a health intervention in Tanzania and to determine the birth prevalence of SCD. Methods Muhimbili University of Health and Allied Sciences conducted NBS for SCD from January 2015 to November 2016. Dried blood spot samples were collected and tested for SCD using isoelectric focusing. Results Screening was conducted on 3981 newborns. Thirty-one (0.8%) babies had SCD, 505 (12.6%) had sickle cell trait and 26 (0.7%) had other hemoglobinopathies. Twenty-eight (90.3%) of the 31 newborns with SCD were enrolled for comprehensive healthcare. Conclusions This is the first report on NBS as a health program for SCD in Tanzania. The SCD birth prevalence of 8 per 1000 births is of public health significance. It is therefore important to conduct NBS for SCD with enrollment into a comprehensive care program.

Sickle Cell Disease in the Democratic Republic of Congo: Assessing Physicians’ Knowledge and Practices

“…However, in this study, the circumstances of SCD diagnosis were mainly the presentation of symptomatic patients, and neonatal diagnoses were only reported by 1% of the physicians. This confirmed data in the literature demonstrating that neonatal screening is still very exceptional in sub-Saharan Africa, and so far, no African country has maintained neonatal screening for SCD in its national program [ 26 , 27 , 28 ]. Currently, rapid tests for screening for sickle cell disease with good sensitivity and good specificity exist [ 29 ].…”

“…Newborn screening for SCD was adopted in 1972 in the United States and has spread to other continents [ 25 ]. Newborn screening made it possible to identify newborns suffering from SCD before the onset of symptoms, to prevent infectious complications and VOC and to reduce the mortality rate of sickle cell children by up to 84% [ 25 , 26 ]. However, in this study, the circumstances of SCD diagnosis were mainly the presentation of symptomatic patients, and neonatal diagnoses were only reported by 1% of the physicians.…”

Sickle Cell Disease in the Democratic Republic of Congo: Assessing Physicians’ Knowledge and Practices

“…Newborn screening for SCD was adopted in 1972 in the United States and was spread to other continents [25]. Newborn screening made it possible to identify newborns suffering from SCD before the onset of symptoms to prevent infectious complications, VOC and to reduce the mortality rate of sickle cell children by up to 84% [25,26]. However, in this study, the circumstances of SCD diagnosis were mainly in the presence of symptomatic patients and neonatal diagnosis was only reported by 1% of the physicians.…”

Empowering newborn screening programs in African countries through establishment of an international collaborative effort

“…Another more recent NBS pilot in 2015-2016 from Muhimbili University of Health and Allied Sciences reported on 3981 newborns. Thirty-one babies were identified with SCD (0.8%), of which 28 (90.3%) were subsequently enrolled in a SCD CCP (Nkya et al 2019). A larger unpublished study has now been completed in the northern Lake Zone, which includes over one-third of the population.…”