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Rationale and design of the Pan African Pulmonary hypertension Cohort (PAPUCO) study : Implementing a contemporary registry on pulmonary hypertension in Africa
Thienemann, Friedrich Dzudie, Anastase Mocumbi, Ana Blauwet, Lori Sani, Mahmoud Karaye, Kamilu Ogah, Okechukwu Mbanze, Irina Mbakwem, Amam Udo, Patience
Thienemann, Friedrich
Dzudie, Anastase
Mocumbi, Ana
Blauwet, Lori
Sani, Mahmoud
Karaye, Kamilu
Ogah, Okechukwu
Mbanze, Irina
Mbakwem, Amam
Udo, Patience
Abstract
Introduction: Pulmonary hypertension (PH) is a devastating, progressive disease with increasingly debilitating symptoms and usually shortened overall life expectancy due to a narrowing of the pulmonary vasculature and consecutive right heart failure. Little is known about PH in Africa, but limited reports suggest that PH is more prevalent in Africa compared with developed countries due to the high prevalence of risk factors in the region. Methods and analysis: A multinational multicentre registry-type cohort study was established and tailored to resource-constraint settings to describe disease presentation, disease severity and aetiologies of PH, comorbidities, diagnostic and therapeutic management, and the natural course of PH in Africa. PH will be diagnosed by specialist cardiologists using echocardiography (right ventricular systolic pressure >35 mm Hg, absence of pulmonary stenosis and acute right heart failure), usually accompanied by shortness of breath, fatigue, peripheral oedema and other cardiovascular symptoms, ECG and chest X-ray changes in keeping with PH as per guidelines (European Society of Cardiology and European Respiratory Society (ESC/ERS) guidelines). Additional investigations such as a CT scan, a ventilation/perfusion scan or right heart catheterisation will be performed at the discretion of the treating physician. Functional tests include a 6 min walk test and the Karnofsky Performance Score. The WHO classification system for PH will be applied to describe the different aetiologies of PH. Several substudies have been implemented within the registry to investigate specific types of PH and their outcome at up to 24 months. Data will be analysed by an independent institution following a data analyse plan. Ethics and dissemination: All local ethics committees of the participating centres approved the protocol. The data will be disseminated through peer-reviewed journals at national and international conferences and public events at local care providers.
Keywords
Date
2014
Type
Journal article
Journal
BMJ Open
Book
Volume
4
Issue
10
Page Range
1-10
Article Number
ACU Department
Collections
Relation URI
Source URL
Event URL
Open Access Status
Published as ‘gold’ (paid) open access
License
CC BY-NC-SA 4.0
File Access
Open