NABDA, established through Federal Executive Council approval has the mandate to coordinate, promote and regulate the development of biotechnology in Nigeria, thereby developing an indigenous critical mass of human and infrastructure resources for biotechnology. In addition to the focus on biotechnology, it also houses an active Bioinformatics unit that aims to provide training and Bioinformatics support.
NABDA is part of the Pan-African Bioinformatics Network for H3Africa, H3ABionet which aims to develop bioinformatics capacity on the African continent. Prof Nash Onyekanmi, Director of the Department of Genetics, Genomics and Bioinformatics is the SPARCO Nigeria Site Data Coordinator.
UATH is an accredited teaching hospital situated in Gwagwalada and is home to several speciality clinics, including Haematology and Transfusion. Patients with SCD are seen by the adult SCD program in the medical outpatient clinic and wards with 24/7 emergency cover by a team of four consultants and registrars (Fig. 8) led by Prof Obiageli Nnodu with two experienced nursing officers Matrons Chinwe Ibeawuchi and Ruth Bako. Children with SCD are seen at the Paediatric SCD Clinic by a team of physicians led by Prof Uchenna Agumadu with Matron Esther James and nurse Evelyn Kumode.
After the death of the pioneer lead, Dr Solomon Adeleke, patients of the once thriving paediatric SCD program dispersed and a new initiative was started by Prof Nebe-Agumadu in 2016. Since 2016, this clinic has increased enrollment by almost 350% from 136 in 2016 to 477 (thus far) for 2018. The close-knit SSG improves patient compliance with medication and increases the level of health education. In addition, interactions in the SSG provides detailed information and feedback regarding for example the unit practices and community mortalities.
CESRTA was established in 2015 and aligns with the Nigerian 5-year strategic plan for non-communicable diseases. In addition to the mandate to carry out basic and translational research in Sickle Cell Disease (SCD), CESRTA under Prof Nnodu’s guidance also provides short-, medium- and long-term training for research as well as to ensure optimal care for SCD patients. During the SADaCC/ SPARCo site visit, a 2-day training session was provided by the SADaCC/ SPARCo Data Management group members. Training was provided for 35 clinicians and Principal Investigators (Fig 11) from the Collaborative Centres of Sickle Cell Support Society of Nigeria (SCSSN: Fig 10) on 1) Data collection and Standardisation, 2) REDCap, 3) Data Analysis and 4) the Sickle Cell Disease Ontology. During this training session there were lively discussions on the restructuring of the current Case Report Form (CRF) used by Nigerian sites for SCD data collection. These discussions led to an improved CRF that will be rolled out once approved.