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Sickle Cell Foundation Nigeria, Rhieos Develop 1st Multi-SCD Registry in Nigeria
In a bid to improve quality of care for persons with sickle cell disorder, Nigeria Sickle Cell Foundation Nigeria, SCFN, and RHIEOS Ventures yesterday signed a Memorandum of Understanding, MoU, to establish the first multi-centre Sickle Cell Disorder, SCD, registry in Nigeria.
The registry will be used to support and improve quality of treatment and care for persons with SCD as well as for policy formulation around sickle cell decision-making and research. The registry will be used to facilitate the implementation of National Guidelines for the management of SCD.
SCD is a major genetic condition in Nigeria. The country has by far the largest burden of the disorder anywhere in the world. Over 40 million Nigerians are carriers of the sickle cell gene and an estimated 150,000 babies are born every year with sickle cell anaemia (Hb SS).
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.