title: Rationale and design of the Pan African Pulmonary hypertension Cohort (PAPUCO) study: implementing a contemporary registry on pulmonary hypertension in Africa.
abstract: BACKGROUND
  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
  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.
  
  
  BACKGROUND
  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.
authors.affiliation: Clinical Infectious Diseases Research Initiative, Institute of Infectious Diseases and Molecular Medicine, Faculty of Health Science, University of Cape Town, Cape Town, South Africa.|Integerafrica Research & Development, Cape Town, South Africa.|Department of Medicine, University of Cape Town, Cape Town, South Africa.
authors.forename: Friedrich
authors.initials: F
authors.lastname: Thienemann
authors.affiliation: Department of Medicine, University of Cape Town, Cape Town, South Africa.|Douala General Hospital, Douala, Cameroon.
authors.forename: Anastase
authors.initials: A
authors.lastname: Dzudie
authors.affiliation: Instituto Nacional de Saúde, Maputo, Mozambique.
authors.forename: Ana O
authors.initials: AO
authors.lastname: Mocumbi
authors.affiliation: Division of Cardiovascular Diseases, Mayo Clinic, Rochester, Minnesota, USA.
authors.forename: Lori
authors.initials: L
authors.lastname: Blauwet
authors.affiliation: Department of Medicine, Bayero University and Aminu Kano Teaching Hospital, Kano, Nigeria.|Department of Medicine, University of Cape Town, Cape Town, South Africa.
authors.forename: Mahmoud U
authors.initials: MU
authors.lastname: Sani
authors.affiliation: Department of Medicine, Bayero University and Aminu Kano Teaching Hospital, Kano, Nigeria.
authors.forename: Kamilu M
authors.initials: KM
authors.lastname: Karaye
authors.affiliation: Department of Medicine, University College Hospital Ibadan, Ibadan, Nigeria.|Ministry of Health, Umuahia, Nigeria.
authors.forename: Okechukwu S
authors.initials: OS
authors.lastname: Ogah
authors.affiliation: Faculty of Medicine, Eduardo Mondlane University, Maputo, Mozambique.
authors.forename: Irina
authors.initials: I
authors.lastname: Mbanze
authors.affiliation: Department of Medicine, College of Medicine, University of Lagos, Lagos, Nigeria.
authors.forename: Amam
authors.initials: A
authors.lastname: Mbakwem
authors.affiliation: Department of Medicine, University of Uyo Teaching Hospital, Uyo, Nigeria.
authors.forename: Patience
authors.initials: P
authors.lastname: Udo
authors.affiliation: Hatter Institute for Cardiovascular Research in Africa, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
authors.forename: Kemi
authors.initials: K
authors.lastname: Tibazarwa
authors.affiliation: Alzaiem Alazhary University, Alshaab Teaching Hospital, Khartoum, Sudan.
authors.forename: Ahmed S
authors.initials: AS
authors.lastname: Ibrahim
authors.affiliation: Khayelitsha District Hospital, Khayelitsha, South Africa.
authors.forename: Rosie
authors.initials: R
authors.lastname: Burton
authors.affiliation: Faculty of Medicine, Eduardo Mondlane University, Maputo, Mozambique.
authors.forename: Albertino
authors.initials: A
authors.lastname: Damasceno
authors.affiliation: Department of Preventative Cardiology, Baker Heart Research Institute, Melbourne, Australia.
authors.forename: Simon
authors.initials: S
authors.lastname: Stewart
authors.affiliation: Department of Medicine, University of Cape Town, Cape Town, South Africa.|Hatter Institute for Cardiovascular Research in Africa, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
authors.forename: Karen
authors.initials: K
authors.lastname: Sliwa
mesh_terms: D000349:Africa; D015331:Cohort Studies; D006801:Humans; D006976:Hypertension, Pulmonary; D015337:Multicenter Studies as Topic; D012042:Registries; D012107:Research Design; D018497:Ventricular Dysfunction, Right
keywords: Africa; HIV/AIDS; pulmonary hypertension