Abstract
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.
Highlights
Registries use observational methods to collect uniform data on individuals with a specific disease, and are of two major types: hospital-based and population-based
We briefly present two case reports illustrating how multifactorial pulmonary vascular disease (PVD) can present in Africa, and how important is the role of infectious PVD as a cause of disability and premature death in the region
We have previously reported on a 13-year-old Mozambican boy presented to Maputo Central Hospital with right diastolic cardiac failure, referred from an high endemic zone of endomyocardial fibrosis (EMF)[26]
Summary
Registries use observational methods to collect uniform data on individuals with a specific disease, and are of two major types: hospital-based and population-based. They serve as clinical information systems that identify relevant sub-populations for proactive care, facilitate individual patient care planning, allow sharing of information to coordinate care, and monitor performance of practice team and care system. HBRs can provide data about the mode of diagnosis, the clinical features of the condition, use of therapeutic options, patient follow-up details, and can be a source of information for PBRs. The diagnosis of pulmonary vascular disease (PVD) is technically demanding and definitions have been evolving[1], partially explaining why the global epidemiology remains unclear. A search on the PubMed for registries in different countries in Africa carried out based on proper keywords in English – including ‘‘hospital-based’’, ‘‘clinical’’ and ‘‘registry’’ and ‘‘pulmonary hypertension’’ – reveals only one hospital-based registry of pulmonary hypertension (PH)[3], and there are no studies on its incidence
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