Sickle Cell Disorder Registry Nigeria (SCDRN)
An initiative of Sickle Cell Foundation Nigeria and PointCareHealth Initiative (Rhieos -Ventures)
The registry is an initiative of Sickle Cell Foundation Nigeria and PointCareHealth Initiative (Rhieos -Ventures) based in Netherlands.
The purpose of this Registry project is to develop a multi-centre registry for persons with sickle cell disorder (SCD) that will be used to support management and care, as well as research.
The registry will comprise electronic data collection tools, database and data management system with analysis and reporting features. It will collect information to learn about the burden of SCD in various parts of Nigeria and will also be used to support health education as well as monitoring and evaluation of sickle cell programmes.
Background
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). Sadly, an estimated 100,000 of these babies do not live to celebrate their fifth birthday; they die mostly from ignorance and lack of access to proper diagnosis and care.
Objectives
The objectives of the SCD Registry (and associated initiatives) are to:
- Collect accurate clinical and patient-reported data on persons with SCD as per registry protocol
- Promote clinical research into interventions
- Support the management and quality of care of persons with SCD
- Foster health promotion, health education and disease prevention programmes
- Enhance the capacity of health care providers
Scope
The registry will collect data on confirmed SCD persons (children and adults) at several sickle cell centres, clinics and hospitals. It will provide an annual report on patient statistics. It will not be used as a treatment programme.
Study Protocol
The National Sickle Cell Centre, Lagos, will be the main Coordination Centre. The detailed scope and operations of the registry will be performed according to the registry protocol.
The Protocol is a document that describes in detail the study design, methodology, research questions to be addressed, data items to be collected - including the reasons for their collection.
It may also include any statistical analysis planned and the basis for assessing the results against project's objectives.
Data Privacy and Use
Data will be collected, stored and managed according to applicable national regulations and international guidelines. Protection of patients and their privacy will be a key priority. The registry will ensure that informed consent is obtained regarding the use of data. SCFN and RHIEOS will be the custodians of the registry and will be deemed the co-owners of the registry given that both parties will invest time and resources into the creation, running and management of the registry. Patients will remain the owners of their individual data and their agreement on its use will be in accordance with their signed informed consent.Standards and SOPs
Registry operations and activities will based on quality standards and procedures to ensure its objectives are met.Stakeholders
The successful operation of the registry will depend on the involvement and support of many stakeholders including healthcare providers, patients, Ministries of Health, patient support groups, NGOs, pharmaceutical companies, medical and professional societies, sponsors and international health organizations.Roles and Responsibilities
Sickle Cell Foundation Nigeria
- Registry Director: Dr Annette Akinsete
- Project Manager / Administrative/Communications Officer: Mr. Ebenezer Adeleye
- Medical & Scientific Advisors: Dr. Titilope Adeyemo, Dr. Seye Akinsete
- Project Coordinator/Quality Officer: Dr. Sola Ojewunmi
- Database/Data Collection Coordinator: Mr. Michael Ottun
- Project Assistant: Ms. Vivian Ojiako.
Rhieos -Ventures
- Registry Director, Strategy and Partnerships: Mr. Larry Ajuwon)
- Database Developer/ Data Management Consultant: Mr Yemi Olagbegi
- Independent Consultants/Advisors: Epidemiologist and Statistician