Consortium on Newborn Screening in Africa Launch, Promote Care of SCD Patients

Consortium on Newborn Screening in Africa Launch, Promote Care of SCD Patients

Each year, an estimated 150,000 babies in Nigeria are born with sickle cell disease (SCD). Yet many do not live past the age of five because they lack access to diagnostic testing and comprehensive care.

In response to this challenge, the University of Abuja and the Sickle Cell Support Society of Nigeria have launched the Consortium on Newborn Screening in Africa (CONSA) Abuja and Kaduna sites.

CONSA’s mission is to evaluate the effectiveness of newborn screening and early therapeutic interventions for babies with SCD in Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda, and Zambia.

Through the leadership of hematologists and public health officials in these countries, CONSA introduces standard-of-care practices for screening and early intervention therapies (such as antibiotic prophylaxis and immunizations) at participating institutions, screening up to 16,000 babies per year in each country and providing clinical follow-up for babies living with SCD.

Sickle Cell Disease is a genetic blood disorder that can be passed to a child when both parents have the Sickle Cell Trait. Normally, red blood cells are disc shaped and flexible to move easily through the blood vessels.

For those living with SCD, red blood cells are crescent or “sickle” shaped. These cells do not bend and move easily and can block blood flow to the rest of the body. Individuals with SCD suffer from acute pain episodes and chronic pain and may be affected by various other organ complications, which can cause disability or even death.

Due to lack of public knowledge on the cause of SCD, and misinformation that it can be spread between individuals, there is intense stigma around SCD. According to the WHO, up to 15 per cent of mortality in children younger than five years of age is due to SCD.

Newborn screening allows families to know their baby’s status and seek low-cost interventions that can reduce adverse health outcomes.

In Nigeria, newborns will be screened at different sites in Abuja and Kaduna. In Abuja, the sites include the University of Abuja Teaching Hospital, Gwagwalada Town Clinic, Dobi Clinic, and Dagiri Clinic and other primary and secondary hospitals in the Federal Capital Territory and Federal Medical Centre Keffi.

In Kaduna, the sites include Barau Dikko Teaching Hospital, Yusuf Dantsoho Memorial Hospital, Gwamna Awan Memorial Hospital, Kawo General Hospital.

As mothers deliver children in the hospitals, or bring them to the clinic for their first vaccines, they will be offered the screening.

Professor Obiageli Nnodu, Director, Centre of Excellence for Sickle Cell Disease Research and Training, University of Abuja and the Nigerian National Coordinator for CONSA said, “We are excited to be the first country in CONSA to launch to demonstrate how newborn screening as an important public health intervention can save the lives of babies born with sickle cell disease in Nigeria.

“ We are happy that despite delays due to the COVID-19 pandemic, we will be able to increase the number of newborns screened, and to promote care for all persons living with SCD in partnership with the Federal Capital Territory Health Authority.

“The Abuja and Kaduna sites will begin screening newborns and entering any who test positive for SCD into clinical follow-up. Staff will examine the long-term health outcomes of people with SCD up to the age of five, providing low-cost interventions and education to the family.

“Through such interventions, we aim to reduce under-five mortality, support achieving Nigeria’s Sustainable Development Goals, and promote the quality of life for all those affected with SCD.”

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