Discussion

SchistoTrack is a prospective human participant cohort led by the Oxford-Uganda Collaboration on Schistosomiasis between the University of Oxford and Uganda Ministry of Health. The purpose of the cohort is to track the development of schistosomiasis-associated morbidities. The baseline of the cohort was completed in 2022 after working in close partnership with rural communities in the study areas for over 10 years. Over 3500 people will be followed annually for another four years to understand the progression of gut and liver disease in the context of Schistosoma mansoni. Within the context of schistosomiasis, tracking morbidity is complex. There are no existing treatment strategies for morbidity within existing health centres or through routine mass drug administration campaigns. Open questions remain concerning community engagement approaches, ancillary care, incidental findings, safeguarding of participants and study team members, identification of roles within research teams, payment to participants, legal considerations, and communication of medical findings to participants. Here we share lessons learned within these ethical dimensions from SchistoTrack, focusing on the topic of ancillary care. Schistosomiasis persists due to social and structural inequities in access to water and sanitation infrastructure, medicines, and health care; it is aggregated in rural poor areas. Due to these characteristics, the lessons shared here are anticipated to be widely applicable to other neglected tropical diseases and global health problems in low-income countries.