The first talk of “Around the globe: Global burden of pulmonary hypertension” by current WHF president Fausto Pinto, dealt with the global burden of cardiovascular diseases with focus on PH. CVDs are the most significant cause of death worldwide, especially in lower to middle income countries. The WHF stresses the importance of increasing awareness of PH to achieve early diagnosis and treatment. In this regard Prof. Pinto highlights techniques for risk stratification in PH patients that determines treatment and patient outcome, both of which have improved in the last two decades.
The second talk by Sophia Emmons-Bell from the IHME, gave an update to the global burden of disease study regarding right heart failure and PAH. In their estimates the IHME uses data from cohort studies and demographics to model estimates of prevalence, incidence, and mortality. These estimates are rendered on a global, country or province level. In 2020 PAH was distinguished as its own cause of RHF within the GBD study. Estimates show that in 2020 there were 1.92 million cases of RHF, 373000 of which were contributed by PAH. In the latter group, patients were predominantly female. The first GBD report to include RHF will be available in 2021.
Estimations of key disease burden indicators are limited by data availability and quality. To this end, the PVRI GoDeep project led by current president Werner Seeger has set goal to establish a world-spanning meta-registry for PH, that includes anonymised data from patients diagnosed by right heart catheterisation. GoDeep will enable deep phenotyping with up to 250 variables, including echo data and functional data as six-minute walk test and cardio-pulmonary exercise test, as well as drug treatments. In his talk Prof. Seeger describes how GoDeep will have two levels of data access, the first level for data exploration and feasibility analysis, and the second to enable unrestricted access for scientific purposes. Inclusion of data from paediatric PH patients, where RHC is often inappropriate, is also planned.
The webinar concludes with poster presentations from Mexico and Indonesia. Humberto Garcia-Aguilar presents findings from PAH patients under triple therapy in an expert centre in Mexico City. Of all included patients 59% received a combination of Macitentan, Sildenafil and Iloprost. Overall survival was 88% after 3 years and 76% after 5 years of treatment. Anggoro Budi Hartopo is then presenting data on mortality of idiopathic/hereditary and connective tissue disease-associated pulmonary arterial hypertension: the data from first single center prospective registry in Indonesia.
Summary by Tobiah Antoine, University of Giessen
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