Pulmonary vascular disease in Africa: Lessons from registries

The epidemiology of pulmonary vascular disease (PVD) remains unclear in Africa, where health systems do not reach the majority of the population and heath information systems are poorly developed. In this context, registries are particularly important in gathering crucial information on PVD, aiming at improving knowledge of the epidemiology and/or quality of care. While population-based registries are the main tool to identify incident cases, and be a better indicator of pulmonary vascular disease burden, hospital-based registries can give an indication of the demand for specific care services, which is useful for health policy and planning. The only registry for pulmonary hypertension in Africa - the Pan African Pulmonary Hypertension Cohort (PAPUCO) - involved four countries, and was a pragmatic study that revealed a unique pattern of environmental risks, issues related to low access to health care, and ill-equipped health facilities for diagnosis and management of pulmonary hypertension. In addition, disease specific registries for conditions such as congenital heart disease and rheumatic heart disease uncovered high occurrence of PVD that can be managed and/or prevented with improvements in community awareness, surveillance, management and prevention. It is suggested that existing networks of experts and researchers develop regional registries to determine the epidemiology of PVD in Africa, assess geographic, environmental and seasonal differentials, as well as inform policy and care provision in the continent.