The Sickle Cell Foundation Nigeria (SCFN) Registry
Advancing Care, Research, and Policy for Sickle Cell Disorder
The Sickle Cell Foundation Nigeria (SCFN) established Nigeria’s first multi-centre Sickle Cell Disorder (SCD) Registry, a groundbreaking initiative designed to enhance the quality of treatment and care for individuals living with SCD.
The Burden of Sickle Cell Disorder in Nigeria
Nigeria bears the highest global burden of SCD, with over 40 million Nigerians carrying the sickle cell gene and an estimated 150,000 babies born annually with sickle cell anemia (Hb SS). Tragically, approximately 100,000 of these children do not survive past their fifth birthday due to lack of access to proper diagnosis and care.
Key Statistics
- 0 Nigerians carry the sickle cell gene
- 0 babies born annually with SCD
- 0 child deaths before age 5
Purpose and Objectives
The SCFN Registry aims to transform sickle cell care and research in Nigeria through the following objectives:
- Support and improve quality of treatment and care for individuals with SCD.
- Facilitate the implementation of National Guidelines for SCD management.
- Provide empirical data on SCD in Nigeria to replace outdated estimates.
- Enhance clinical research opportunities with global collaborators.
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Guide policy formulation and strategic decision-making.
- Strengthen health education, screening, and preventive measures.
Scope and Data Collection
The registry collects and maintains accurate, standardized data on children and adults diagnosed with SCD from multiple sickle cell centers, clinics, and hospitals across Nigeria. It includes an electronic data collection system, a robust database, and advanced data management tools with reporting capabilities.
Strategic Collaboration
SCFN partnered with RHIEOS Ventures to develop this long-overdue National Registry, providing valuable insights into disease prevalence, management outcomes, and areas requiring intervention.
Impact and Future Prospects
The SCFN Registry is set to revolutionize sickle cell care in Nigeria by:
- Providing a foundation for evidence-based healthcare policies.
- Strengthening healthcare provider capacity through training.
- Facilitating clinical trials and research for improved treatments.
- Supporting public health initiatives for early diagnosis and education.
Roles and Responsibilities
| Name | Role |
|---|---|
| Dr. Annette Akinsete | Registry Director |
| Research Officer, SCFN | Project Coordinator/Quality Officer |
| Research Officer, SCFN | Database/Data Collection Coordinator |
| Ms. Vivian Ojiako | Project Assistant |
| Dr. Titi Adeyemo (LUTH) | Principal Investigator |
| Dr. Seye Akinsete (LUTH) | Scientific Advisor |
| Mr. Larry Ajuwon | Registry Director, Strategy/Partnerships Liaison |
| Mr. Yemi Olagbegi | Database Developer/Data Management Lead, Consultant |
Access to the Registry
Healthcare providers, researchers, and stakeholders can contact:
partnerships@sicklecellfoundation.com
+234 913 957 6794