SICKLE CELL COLLABORATIVE IN NIGERIA
BACKGROUND & PURPOSE
Much progress has been made in management and cure of sickle cell disease in the USA, but a huge population of sickle cell patients in Nigeria has not yet benefited from this progress. Early diagnosis through newborn screening is fundamental to better care. Nigeria is the most populous country in Africa. The estimated number of Nigerian babies with sickle cell disease is about 100,000 per year, which is more than the total number of Americans of all ages living with sickle cell disease. Nigeria has oil wealth and a lot of economic growth but big disparities in income. There are multiple ethnic and linguistic groups, and Kaduna state is a microcosm of the country’s diversity. The governor of Kaduna state has decided to fund newborn screening for sickle cell disease as a demonstration of feasibility.
Our collaborative will work to set up newborn screening services in Kaduna state Nigeria utilizing prior experience in several states on sickle cell newborn screening. The team will draw upon the programs for newborn screening in Ghana, USA, and UK. We will also use Implementation Science approaches and a range of community health workers to adapt the programs to the needs of Nigeria. We plan to visit Abuja, Nigeria in the near future to help launch the newborn screening program by “train the trainer” sessions: training staff there to train Community Health Workers and to use Implementation Science.
WHAT ARE WE
A loose collaborative group of the following partners:
Chicago: UI Health Sickle Cell Center (pediatric and adult, including bone marrow transplant team); Loyola University Medical Center at Maywood
Nigeria: University of Ibadan; Kaduna State University; Bingham University; Bowen University
United Kingdom: Kings College; Guys and St Thomas Hospital; Oxford University Hospital
Loose collaborative group. Chicago: UIHealth sickle cell center, pediatric and adult, including bone marrow transplant team, Loyola University Med Center at Maywood.
Nigeria: University of Ibadan, Kaduna State University, Bingham University, Bowen University. United Kingdom: Kings College, Guys and St Thomas Hospital, Oxford University Hospital.
PROGRESS TO DATE
The collaborative has published two papers together with University of Ibadan, on genomics and on a demonstration trial of hydroxyurea safety and feasibility.
1: Saraf SL, Akingbola TS, Shah BN, Ezekekwu CA, Sonubi O, Zhang X, Hsu LL, Gladwin MT, Machado RF, Cooper RS, Gordeuk VR, Tayo BO. Associations of α-thalassemia and BCL11A with stroke in Nigerian, United States, and United Kingdom sickle cell anemia cohorts. Blood Adv. 2017 Apr 25;1(11):693-698. doi:10.1182/bloodadvances.2017005231.
PubMed PMID: 28868518;
PubMed Central PMCID:
2: Akingbola TS, Tayo BO, Salako B, Layden JE, Hsu LL, Cooper RS, Gordeuk VR, Saraf SL. Comparison of patients from Nigeria and the USA highlights modifiable risk factors for sickle cell anemia complications. Hemoglobin. 2014;38(4):236-43.
doi: 10.3109/03630269.2014.927363. Epub 2014 Jun 18.
PubMed PMID: 24941131;
PubMed Central PMCID: PMC4161131.
Additionally, Dr. Lewis Hsu has participated in several grant applications for newborn screening for sickle cell in Nigeria (European Union Marie Curie RISE program, Wellcome Trust, British NHS, Children’s Prize). The video pitches the need and the main ideas we are trying to get funded.
Lewis Hsu, MD, PhD
Professor of Pediatrics
UI Health Sickle Cell Center