By Chioma Obinna
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, M oU, 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).
In press statement to announce the development in Lagos, the SCDRN Coordinator, Dr. Sola Ojewunmi who regretted that 100,000 babies do not live to celebrate their 5th birthday in Nigeria due to ignorance and lack of access to proper diagnosis and care said: “We are very excited to start the development of the first multi-centre SCD registry in Nigeria which would be of benefit to persons with the disorder, caregivers and doctors”
Ojewunmi explained that the Registry will collect data on children and adults with SCD and it will serve as a platform on which policies and plans around this condition will be anchored.
“The policies and plans will cover screening programmes, early diagnosis as well as prompt treatment interventions, with the ultimate goal of reducing morbidity and mortality,” he noted.