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

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.

Data Resource Profile: The sentinel panel of districts: Tanzania's national platform for health impact evaluation.

The Sentinel Panel of Districts (SPD) consists of 23 districts selected to provide nationally representative data on demographic and health indicators in Tanzania. The SPD has two arms: SAVVY and FBIS. SAVVY (SAmple Vital registration with Verbal autopsY) is a demographic surveillance system that provides nationally representative estimates of mortalities based on age, sex, residence and zone. SAVVY covers over 805 000 persons, or about 2% of the Tanzania mainland population, and uses repeat household census every 4-5 years, with ongoing reporting of births, deaths and causes of deaths. The FBIS (Facility-Based Information System) collects routine national health management information system data. These health service use data are collected monthly at all public and private health facilities in SPD districts, i.e. about 35% of all facilities in Mainland Tanzania. Both SAVVY and FBIS systems are capable of generating supplementary information from nested periodic surveys. Additional information about the design of the SPD is available online: access to some of SPD's aggregate data can be requested by sending an e-mail to [hmasanja@ihi.or.tz].