The first multi- center sickle cell disorder, (SCD) registry in Nigeria has been established.
The memorandum of understanding (MoU) to this effect was signed by the Nigeria Sickle Cell Foundation, SCFN and the RHIEOS ventures, during the weekend.
The registry will support and improve quality treatment and also care for SCD persons and draw policies around sickle cell decision-making and research. It will also be used as an engine to facilitate the implementation of national guidelines for the management of SCD.
Dr. Sola Ojewunmi, SCDRN Coordinator expressed her regret on the 100,000 babies who do not live up to their 5th birthdays in Nigeria as a result of ignorance and lack of access to proper diagnosis as stated “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”.
He enlightened that the registry will collect data on children and adults with sickle cell disorder (SCD) and it will serve as a platform on which policies and plans around this condition will be anchored.
In her words, “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.