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Update on the Consortium on Newborn Screening in Africa, With Prof. Obiageli E. Nnodu v1

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ASH member and national coordinator of the CONSA network in Nigeria, Professor Obiageli E. Nnodu, provides an update on the newborn screening program.

The 2021 Henry M. Stratton Medal has been awarded to Denisa Wagner, PhD, and Kwaku Ohene-Frempong, MD, in recognition of their contributions to hematology in basic science and clinical and translational research, respectively. This award is named after the late Henry Maurice Stratton, cofounder of Grune & Stratton, the medical publishing house that first published ASH’s flagship journal, Blood. Dr. Wagner, the Edwin Cohn Professor of Pediatrics at Harvard Medical School and a senior investigator in the Program in Cellular and Molecular Medicine at Boston Children’s Hospital, has made several significant contributions to the fields of vascular biology, inflammation, and thrombosis. Dr. Ohene-Frempong, a world leader in the treatment of sickle cell disease (SCD), is an emeritus professor of pediatrics at Children’s Hospital of Pennsylvania.

With her dedicated CONSA colleagues in Abuja and Kaduna States, Prof. Nnodu has mobilized a network of health care professionals who share her vision, and the past year saw a promising start to their efforts. “These sites in Abuja had been part of an innovative newborn screening (NBS) pilot program, funded by the Doris Duke Foundation,” noted Prof. Nnodu, citing the preparations that also began for a community-based state NBS program in Kaduna State. “We are surprised at the data we are seeing,” Prof. Nnodu began, citing the screening data from 2,619 infants. These numbers demonstrated the prevalence of FA [normal hemoglobin] at 67.6 percent, FAS [presence of sickle cell trait] at 30 percent, FS [SCD] at 0.76%, and FSC [hemoglobin SCD] at 0.07%. “This is a bit different from earlier results in the same region and the recent National Demographic Health Survey 2018,” she said, highlighting that the data showed a lower-than-normal expected prevalence of SCD and hemoglobin SCD. Dr. Nnodu remarked that she and her colleagues are not sure why this is the case, but CONSA looks forward to analyzing more data from new screenings over the next several years.

The group has also had to stay vigilant and ready to respond to challenges and opportunities as they appear. For example, upon hearing about the program launch, the Abuja Federal Capital Territory expressed their full support, even mandating that Prof. Nnodu and colleagues cover the entire state and pledging to provide support for screen-detected infants with SCD. However, at the time of publication, this has not yet happened, and Prof. Nnodu and her collaborators are feeling the ensuing weight while continuing to advocate for government support. “We have borne the logistics of upscaling the program across 14 primary health care centers and providing the penicillin and folic acid ourselves,” she said. Additionally, Prof. Nnodu pointed out the community-based security challenges in Kaduna State, on top of the strain of the COVID-19 pandemic and a health care workers strike — all variables affecting the program’s recruitment numbers.

Despite these hurdles, Prof. Nnodu and her CONSA colleagues remain encouraged, in particular by the great passion and commitment of some of their staff members, who go above and beyond in the collection of the necessary blood samples/dried blood spots (DBS), traveling each week to collect the DBS from every primary health center. Furthermore, Prof. Nnodu is proud of the very young infants who have been screened, detected, and received follow-up thus far. The project has also demonstrated some important realities: “Newborn screening is feasible,” she began, “and is providing opportunities to build capacity in laboratory diagnosis, quality assurance, collection of DBS, and all aspects of a screening and follow-up program.”

With this in mind, it isn’t difficult for Prof. Nnodu and colleagues to keep an optimistic eye to the future. “Our First CONSA baby [baby diagnosed with SCD] in Nigeria recently turned one year old,” she said of one of the past year’s milestones. “My staff went to the home to celebrate with a cake and some drinks.”

Learn more about the work of CONSA on the ASH website.

Further Reading

  • Nnodu OE, Sopekan A, Nnebe-Agumadu U, et al. Implementing newborn screening for sickle cell disease as part of immunisation programmes in Nigeria: a feasibility study. Lancet Haematol. 2020;7, e534-e540.
  • Inusa BPD, Anie KA, Lamont A, et al. Utilising the 'Getting to Outcomes®' Framework in Community Engagement for Development and Implementation of Sickle Cell Disease Newborn Screening in Kaduna State, Nigeria. Int J Neonatal Screen. 2018;4:33.
  • National Population Commission (Nigeria) and ICF Nigeria Demographic and Health Survey 2018. Available at: https://dhsprogram.com/pubs/pdf/FR359/FR359.pdf. Date accessed: October 21, 2021.
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