INTRODUCTION

This research workshop was held as a hybrid (virtual and in-person) meeting organized by the Sickle Pan Africa Research Consortium NigEria Network (SPARC-NEt). The event took place at the Trauma Center, National Hospital Abuja from Monday 23rd to Tuesday 24th of May 2022.

The aim of the workshop was to review the first year of the project and prepare for year 2 activities. As some of the collaborating sites were not part of Phase 1 of the project, they therefore needed some training as the project would be going into a research-orientated  phase in year 2.  The activities of the 2^nd phase include the take-off of consortium-approved research studies out of which SPARC-NEt will lead the new-born screening study. The scope of the workshop also covered engagement with relevant stakeholders (Ministry of Health, Pharmaceutical companies, NGOs, and the Patient Support group) with the overall objective of ensuring access to early diagnosis and better care/management to reduce morbidity and early mortality of sickle cell disease (SCD) patients.

The key facilitator of this meeting was Emmanuel Peprah Jr, PhD, Director of Implementation Science for Global Health, the Director Implementing Sustainable Evidence-based interventions through Engagement (ISEE) Lab, an Assistant Professor for Global Health & Social and Behavioural Sciences in the Global Health Program of the Department of Social and Behavioural Sciences  NYU School of Global Public Health, New York.

He is a consortium member and collaborator on the project.  A total of 54 participants attended this meeting.

PRESENTATIONS

On day one, the first session was the scientific one where presentations on two of the consortium-approved implementation research studies were done these being on the familiarization of the research protocols for the New-born screening study and on the Penicillin prophylaxis and Hydroxyurea study. The Protocol on the Implementation of the wider use of penicillin prophylaxis and hydroxyurea therapy for sickle cell disease in sub-Saharan Africa was presented.  Reasons for the limited use of hydroxyurea, the methods for achieving the objectives, the strengths and weaknesses of the study were among the issues discussed. The research protocol for the Newborn Screening (NBS) was presented, with the facilities and resources to support NBS in clinical networks was highlighted. An overview of procedures for newborn screening,  the ethical, legal and social implications in newborn screening, and various tools for data/survey were among the topics discussed.

This session was followed by an opening ceremony where, the SPARC-Net PI made a presentation on the Overview of SPARCo achievements and impact on patient management and research. Among activities carried out by the project was the establishment of an electronic patient-consented registry that currently consists of 7,414 SCD patients recruited using uniform case report forms. There has also been the development of multilevel standard of care guidelines, training of health care workers and training of scientists in database development and database management; there was training in the multidisciplinary management of SCD, with the completion of several pilot studies resulting in 26 publications in peer reviewed journals as some of the achievements of the project in its first phase. 

The second day of the workshop was dedicated to scientific sessions, majorly on implementation science and on the two planned cohort studies  This session started with an outline of plans for year 2 of the project.  There was a further talk on implementation science by Dr Peprah, with the Protocols for Malaria Chemoprophylaxis and for Pharmacogenomics presented respectively. The outcome of the workshop will enable the participants to  

• Effectively undertake data management processes in a timely manner
• Appropriately apply the adopted protocols towards the research studies
• Understand the basic principles and application of implementation science vis a vis pertinent research studies.
• Engage relevant stakeholders towards improvement of the overall care of the SCD patient etc., all these geared towards effective execution of the 2^nd year of the project.

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