The Caribbean, Central and South America Network for HIV Epidemiology: 20 Years of HIV Research in the Region

INTRODUCTION: Latin America is a key region in advancing efforts to end the HIV epidemic globally. Despite breakthroughs in HIV treatment and prevention in the last 20 years, as well as region-wide improvements in health infrastructure and policies, there has been a 13% increase in new acquisitions in Latin America from 2010 to 2024. The Caribbean, Central and South America network for HIV epidemiology (CCASAnet), established in 2006, is one of seven regions in the International epidemiology Databases to Evaluate AIDS (IeDEA). CCASAnet contributes substantially to regional science and the development of national and region-wide policies. Here, we describe data sources and operational methodologies employed by CCASAnet, as well as the current state of the cohort. METHODS: CCASAnet data are collected using standardized data elements, including demographic information, HIV disease history, laboratory data, antiretroviral regimens, co-infections and comorbidities. Data collection has expanded to include prospective data such as substance use, antiretroviral therapy adherence, geriatric syndromes and tuberculosis treatment. All clinical sites retain ownership of their data, and CCASAnet data contribute as able to global IeDEA-level projects. Robust data quality initiatives and statistical methods have strengthened the cohort. RESULTS: CCASAnet consists of nine clinics across seven countries (Argentina, Brazil, Chile, Haiti, Honduras, Mexico and Peru). Over 61,000 adults and children living with HIV have contributed observational data through December 2023. While CD4 at enrolment has remained largely unchanged, time to antiretroviral therapy initiation has decreased, retention in care has improved and the proportion with undetectable HIV RNA has dramatically increased. Co-infections and AIDS-defining malignancies remain a cause of morbidity and mortality, but non-communicable diseases have also increased. Overall mortality trends in the region have improved over time, with some notable exceptions. CONCLUSIONS: Underscoring the importance of maintaining longitudinal collaborations and data collection, CCASAnet remains the largest source of high-quality data for HIV epidemiology in Latin America and serves as an important evidence base for informing global and regional policy and stakeholder decisions related to the HIV epidemic.