Sickle Cell Foundation Partners RhieosVentures to Develop First Multi-center Registry
The Sickle Cell Foundation Nigeria (SCFN) has partnered Rhieos Ventures to develop the first multi-centre sickle cell disorder (SCD) registry in Nigeria.
The collaboration is to improve quality of care for persons with sickle cell disorder and the registry will be used to support and improve quality of treatment and care for persons with Sickle Cell Disease (SCD), as well as for policy formulation around sickle cell decision-making and research. At the recent signing of a Memorandum of Understanding to formalise the collaboration, the duo said the registry will also be used to facilitate the implementation of National Guidelines for management of SCD.
The statement made available to THISDAY by the partners read thus: “SCD is a major genetic condition in Nigeria and 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).
“Sadly, 100,000 of these babies do not live to celebrate their fifth birthday and they die mostly from ignorance and lack of access to proper diagnosis and care.
“Therefore, 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. “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. To learn more about the registry please visit: https://pointcarehealth. com/scdrn .”
While the SCFN established the National Sickle Cell Centre (NSCC) with at mission to develop a world class centre that will drive the search for effective solutions to sickle cell and related disorders, Rhieos Ventures is a UK/Netherlands-based service company focused on enabling clinical research and better access to healthcare solutions for Sickle Cell Anaemia and other tropical diseases.