Variant Bio Launches New Partnership on Kidney Disease in South Africa
Variant Bio is excited to announce our first research project in South Africa through a partnership with the African Research on Kidney Disease (ARK) Consortium — South Africa.
The ARK Consortium includes researchers from South Africa, Malawi, Uganda, and the London School of Hygiene and Tropical Medicine. The overall aim of this collaboration is to better understand kidney disease in Sub-Saharan African populations. More specifically, our research collaboration focuses on determining the burden of kidney disease, its causes, and how we might prevent kidney disease in our communities.
To help in this effort, Variant Bio is teaming up with a group of researchers at the University of the Witwatersrand in Johannesburg, South Africa. They are led by Dr. June Fabian, the principal investigator (PI) of the South African arm of ARK. June is a nephrologist (kidney doctor) at the Wits Donald Gordon Medical Centre. She works closely with her co-investigators, Professors Michele Ramsay of the Sydney Brenner Institute of Molecular Bioscience, and Stephen Tollman, of the MRC/Wits Rural Public Health and Health Transitions Research Unit in Agincourt. June has led the South African arm of ARK since 2016, working with rural communities around Agincourt in the Bushbuckridge sub-District of Mpumalanga Province, South Africa. In her capacity as a clinical researcher and a medical doctor, she has helped understand the notably high burden of kidney disease in the region, and investigated the root causes of this disease.
Kidney Disease in Sub-Saharan Africa
The community in Agincourt is at high risk for kidney disease from before birth, through childhood and adolescence, and into adulthood. While the causes of kidney disease are well described in high income countries, such as the U.S., relatively little is known about the risk factors that lead to kidney disease and how common these are in Sub-Saharan Africa. In recent studies of Sub-Saharan African populations, researchers were unable to identify a cause of kidney disease in up to two thirds of cases. Additionally, severe kidney disease treatment is costly, requiring either chronic kidney dialysis or a kidney transplant. These medical procedures are often out of reach of the poor or medically under- or uninsured, rendering this condition fatal.
Together with our collaborators at ARK, Variant Bio aims to identify genetic risk factors that cause kidney disease in South Africans and to improve the tools used to diagnose kidney disease. That way we can identify it earlier and delay progression to severe disease.
Our Study
In this study, Variant Bio is lending our expertise in whole-genome sequencing to complement the work that has already been undertaken by the ARK team in Agincourt. We will be comparing the genomes of a group of people with poor kidney function to a group with good kidney health, and investigating whether there are differences between the groups that can be attributed to genetic susceptibility.
In addition to the genomics analyses, we are also collaborating with the Centre for Human Metabolomics (CHM) at the Potchefstroom Campus of the North-West University in South Africa. Dr. Ilse Du Preez will be leading our efforts there to analyze blood samples from a metabolomics perspective. In short, metabolomics is the study of very small compounds in a biological sample, such as blood or urine. These small compounds are the building blocks of proteins, fats, and DNA, and their concentration can change depending on genetics, the environment, or whether or not someone has a disease.
We will be looking at the differences in the metabolomes of healthy people vs. those with kidney disease to better understand why some individuals are more likely to develop severe disease. These differences can also reflect the effect of kidney damage by identifying the compounds in the blood which accumulate or deplete because the kidneys are not filtering the blood and excreting waste properly. Such differences might be able to provide clues as to the type and causes of a person’s kidney disease.
If those differences are associated with certain genes, or certain environmental risks, this also provides us with clues as to how exactly genes and/or the environment are influencing kidney health. Ultimately, such insights could lead to modified or new, more effective kidney disease treatments and preventative medicine.
Community Engagement
Before Variant Bio embarks on genomic or metabolomic sample collection and analyses, our first step in any project is to gather input about the study and buy-in from participating communities (see here for a recent example of our approach in Madagascar). This process helps to ensure that local communities are engaged in an individualized, ethical, and culturally attuned manner. At Variant Bio, we emphasize what is known as “co-creation and consultation” in all of our projects, meaning that the communities and individuals who share their genetic data with us are actively involved in the creation of the research design to the extent that they want to be. This involves consulting with communities as true research partners, as opposed to research subjects. It constitutes an important step in project creation and is in addition to the formal process of human subjects research ethics approval (often done through an academic institution or government) that is also secured prior to the start of all projects.
To that end, in May 2021 Dr. Fabian traveled to meet with the Community Advisory Board (CAB) in Agincourt, which was facilitated and hosted by the community engagement team from the MRC/Wits Rural Public Health and Health Transitions Research Unit in Agincourt. Over many years, the unit has nurtured and sustained a strong relationship with communities included within their study site. Communities are consulted about future studies and their research needs, and researchers provide feedback about their results. The CAB comprises representatives called to serve by their elders and chiefs. Their responsibilities are to represent the interests of their communities and provide feedback about the health research projects being proposed.
At this meeting, Dr. Fabian gave a summary of the ARK project and the work done in Agincourt thus far. She highlighted the magnitude of chronic kidney disease and associated risk factors specific to the Agincourt community. She explained that her group is collaborating with Variant Bio in the United States and requested to use previously collected blood and DNA samples of participants with kidney disease and a control group with no kidney disease for further studies.
The team solicited feedback and questions about the project. Community Advisory Board members asked questions about how the project will be carried out, and about kidney disease, such as the currently available treatments, what is involved in dialysis treatment, how genes might contribute to whether or not someone recovers from kidney disease, and when the impact of this research can be expected to make a difference in the lives of the participants. The community also asked about how Variant’s benefit sharing funds will be distributed (to read more about our benefit sharing program, you can check out our blog post here). All in all, it was a very fruitful discussion. The Community Advisory Board expressed their support of the project and Variant Bio’s involvement, and the project has obtained approval from the Wits Human Research and Wits Biobanking Ethics Committees. We would like to thank our collaborators in South Africa as well as all the CAB members for their thoughtful feedback and enthusiasm for the project. We can’t wait to commence the project and hopefully get one step closer to alleviating the burden of kidney disease in Africa and the world.
