The Pan African Pulmonary Hypertension Cohort Study

Title: Implementation of the PAPUCO Registry

Background to PAPUCO Registry

The Sub-Saharan Task Force on Pulmonary Hypertension, under the leadership of Dr Ana Olga Mocumbi and Prof. Sliwa, was established in January 2010. The primary aim of this Task Force was to establish a Sub-Saharan African Registry of Pulmonary Hypertension (PHT) and, subsequently, other research and educational awareness projects.

PHT is a devastating, progressive disease, with increasingly debilitating symptoms and, usually, shortened overall life expectancy. The epidemiology of PHT in Sub-Saharan Africa has not yet been determined, but limited reports suggest that the incidence is higher that than reported from developing countries, owing to the pattern of diseases prevalent in the region. Many known factors for PHT are hyperendemic in this part of the world, including Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome, schistosomiasis, chronic hepatitis B and C and Sickle Cell Disease. On the other hand, a high prevalence of tuberculosis, poorly treated asthma, high levels of pollution in urban areas and exposure to mining, subsequently leads to various forms of pulmonary hypertension and, often, to right heart failure with premature death. Lack of adequate paediatric services to deal with congenital heart disease that leads to pulmonary hypertension, and secondary pulmonary hypertension, is commonly seen, due to the high prevalence of rheumatic heart disease and endomyocardial fibrosis

However, more detailed information is currently not available, thus also leading to poor awareness of those devastating problems, not only in Sub-Saharan Africa, but worldwide. There is, therefore, an urgent need for research into the demographics, natural history and survival of patients with pulmonary hypertension.