Approximately 150,000 Nigerian children are born with sickle cells, which is the most severe inherited blood disorder.
“I was not happy when I read that Nigeria will have the highest contribution to the global burden of sickle cell disease by 2050 – if we continue at the present birth rate and the level of inactivity in newborn screening,”Obiageli Nnodu, M.D., a hematologist, is the lead researcher in Nigeria for Sickle Pan African Research Consortium. This consortium was funded by the National Heart, Lung, and Blood Institute, part of the National Institutes of Health. “As a country, we can do better than that. After all, this is a disease where children die undiagnosed, and largely from preventable causes such as bacterial infections.”
Sickle cell diseases affect 20 million people in total, with approximately 100,000 living in the United States. The majority of those affected are African Americans, but there are also Hispanics, and Asian-Americans. The NHLBI supports programs in subsaharan Africa as a way to tackle the problem. Sub-Saharan Africa is where more than 75% the world’s sickle cell diseases are born. SPARCo has a hub located in Tanzania and additional locations in Nigeria and Ghana. It works to create an infrastructure that allows sickle cell research, education, and health care to be carried out in Africa.
“We are showing that with effective partnerships, significant advances in health and biomedical science can be achieved,”Julie Makani, M.D. from Tanzania, is the SPARCo coordinator. SPARCo was established in collaboration by the Sickle Africa Data Coordinating Center led by AmbroiseWonkam, M.D. in South Africa. Sickle In AfricaThe electronic registry includes more than 10,000 people with sickle cell diseases.
“The genetic diversity of Africa’s population allows scientific research that will increase our understanding of how a disease caused by a single gene can manifest in such different ways,”Makani explains.
Nnodu states that newborn screening is the first way to decrease the number of deaths and suffering in these children. However, good diagnostic tests must be available at the point they are being cared for. NHLBI supports research to develop diagnostics such as a new blood test. rapid result testIt is accurate, inexpensive, and can quickly diagnose sickle cell disease. It does not require any sophisticated laboratory equipment, refrigeration, electricity or highly trained personnel, which is an important advantage in countries with limited resources.
The treatment side of things a large multinational NHLBI-funded clinical trialA daily hydroxyurea tablet proved to be safe and effective for children with sickle cell disease. As part of its research, the NHLBI is also working to develop genetic treatments for the disease. a newly announced NIH collaboration with the Bill & Melinda Gates Foundation. The partnership, which also deals with HIV, aims to bring possible gene-based treatment options to clinical trials in the United States of America and other relevant countries in sub Saharan Africa in the next seven to ten years.
“A person’s health should not be limited by their geographic location, whether it’s in rural America or sub-Saharan Africa,”Gary H. Gibbons (M.D.), director of NHLBI. “Harnessing the power of science is needed to transcend borders if we want to improve health for all.”
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