General Updates | The aims and projects of the SickleInAfrica consortium

So SickleInAfrica is a consortium which involves seven countries in Africa. And we have had two phases that have been supported by the NIH through the NHLBI. So the first phase started in 2017 for three years. And then we got, and that was only involving three countries, Tanzania, Ghana, and Nigeria. But later on, we had efforts to increase, to expand the network from the other countries. So now we have seven countries, including, Tanzania, Ghana, Nigeria, and then we have Uganda, we have Mali, we have Zambia, Zimbabwe, and we have two coordinating centers. So we have the clinical coordinating center, which is hosted within the Muhimbili University through the Sickle Cell program in Tanzania. And then we have the Data Coordinating Center, which is hosted in the University of Cape Town in South Africa. 

And the main role, even from the first phase that we had, was really one to establish a registry of patients with sickle cell disease. And registries are important, very important, because usually even when we engage the ministries of health, and this is a question that is always asked, where are these people? So knowing where they are, having their demographic profile, so who are they? What are the ages? Where are they going to seek for health care? Which hospitals and all that? If you can capture that information, then it’s really informative. So number one, the registry is really critical because of informing in terms of health care provision. But number two, it’s also very important because it informs in terms… and it can be a very good platform for research. So you can plan different research, even clinical trials, observation studies, you know, translational studies and all that because, you know, you can start from the registry. So the SickleInAfrica had this initiative started because of that. And at the moment, we have, I think, close to 70,000 patients in the registry from all these countries that I’ve mentioned. So number one was to establish a registry for patients with sickle cell disease. 

Number two, and again, this was a goal that we started from the very first phase, was one, to plan for research, and in the second phase, to execute or implement the research that we will select as a consortium. So we started and we planned for two categories of research, so implementation science. This is because sickle cell disease is not a new disease. It has been there for a number of years, and there are known interventions that have been developed elsewhere, have been utilized elsewhere, but probably for one reason or another, we are not able to implement them fully in Africa. So under that, we had newborn screening because we have seen even in developed countries, including USA and UK, that newborn screening itself is an intervention that has brought down the mortality and morbidity level by a significant percent. So newborn screening has been implemented in Africa, but really a small, small project. And we don’t have a lot of countries that have managed to push for newborn screening to become a universal kind of an initiative, at a national level. So we thought that coming together, having data from seven African countries that is showing how we are implementing newborn screening and most importantly, proposing to improve and enhance newborn screening initiatives through utilization of point-of-care testing, utilization of immunization platforms, and things like those was quite important for the consortium. So that was under research and implementation science. 

And the other study that we agreed to do was to look at hydroxyurea utilization. Again, we know hydroxyurea is a major… the only drug that we have for sickle cell disease at the moment, but the utilization is still quite low in Africa for a number of reasons, so we wanted to have a very systematic study looking at different factors that may influence hydroxyurea and penicillin utilization in Africa. 

And then the other category of research was cohort studies. And the first cohort study that we agreed that we should pursue is looking at an observational study on malaria in sickle cell disease. And we all know the history about malaria and sickle cell disease, the selection pressure from malaria and the overlap because of that and the sort of protection that carriers have. But we have never had really a systematic observational study in Africa that can inform in terms of chemoprophylaxis for malaria, for sickle cell disease. And the other study that we also agreed to do was pharmacogenomics of pain treatment response. And this is because pain is a common, but also the most crucial symptom or complication that the patients with sickle cell disease would come to the hospital or would complain about. So we thought that there are a number of interventions that are provided, a number of drugs, but of course the responses are different. So looking at how the genetic factors may influence the treatment response of different opioids in patients with sickle cell disease. So four studies that we agreed to implement in this second phase. 

And the other things really, those are the key ones, registry and research. But then through this, we want to be able to inform and improve healthcare provision in Africa. That’s why we are doing all of this. So we do have different initiatives that have been done by the consortium. So one of which is a development of consortium sickle cell disease management guidelines that have really comprised the different practices across the continent and also benchmarking elsewhere and in other places globally. And this is really to harmonize the different practices and to enhance provision of care again. So that has been done and we do have the guideline uploaded in our website. And now what we are doing is really to push for the uptake and use of these guidelines across the consortium. 

And another thing that we do very passionately is building the capacity of the healthcare community in these countries, because as much as the awareness is increased, but we still have proportion of healthcare personnel who are not really aware or they don’t know what to do when they encounter someone with sickle cell disease. So we try and build capacity of different cadres of healthcare personnel, so doctors, nurses, laboratory scientists, laboratory technicians, pharmacists, and the like. But we also, because we are implementing different initiatives, different research studies across the consortium, building the capacity of the teams in the different countries in different aspects. So things like project management, project coordination, grant writing skills, again, implementation, how to implement research in a quality manner. We have a lot of people within the consortium with really good expertise in different areas of research, so we try to leverage on this and have them share the expertise and experiences with early career researchers that we have across the consortium and the like. And again, lastly, we build capacity for data analysis and this is what is being spearheaded by the data coordinating center working very closely with the clinical coordinating center in Tanzania.

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