<abstract xmlns="http://www.w3.org/1999/xhtml"><p>Pulmonary arterial hypertension (PAH) is a rare disease with average median survival rate about 3 years from the establishment of the diagnosis, except for PAH associated with congenital heart diseases. Diagnosis and management of PAH concentrate in the dedicated centres (reference centres, centres of expertise). The purpose of a reference centre is to undertake assessment and investigation of all causes of pulmonary hypertension, PAH-specific drug therapy, cooperation with other healthcare specialist, and to undertake research and education. In general, high volume centres achieve best outcomes, because of effective concentration of the specific experience and skills needed for rare disease management.</p><p>The paper brings brief characteristic of the reference centre for PAH according the guideline of European Society of Cardiology as well as own experience in this field.</p></abstract>

Pulmonary arterial hypertension (PAH) is a rare disease with average median survival rate about 3 years from the establishment of the diagnosis, except for PAH associated with congenital heart diseases. Diagnosis and management of PAH concentrate in the dedicated centres (reference centres, centres of expertise). The purpose of a reference centre is to undertake assessment and investigation of all causes of pulmonary hypertension, PAH-specific drug therapy, cooperation with other healthcare specialist, and to undertake research and education. In general, high volume centres achieve best outcomes, because of effective concentration of the specific experience and skills needed for rare disease management.The paper brings brief characteristic of the reference centre for PAH according the guideline of European Society of Cardiology as well as own experience in this field.

Pulmonary Arterial Hypertension Centre – A Model for Rare Disease Management / Centrum pre pľúcnu artériovú hypertenziu – model v manažmente zriedkavých chorôb

National Cardiovascular Institute, Pulmonary Arterial Hypertension Centre,
Department Heart Failure/Transplantation, Bratislava, Slovakia

European Pharmaceutical Journal

Pulmonary arterial hypertension (PAH) is a rare disease with average median survival rate about 3 years from the establishment of the diagnosis, except for PAH...

Pulmonary Arterial Hypertension Centre – A Model for Rare Disease Management / Centrum pre pľúcnu artériovú hypertenziu – model v manažmente zriedkavých chorôb

Published Online: Apr 20, 2013

Page range: 22 - 25

DOI: https://doi.org/10.2478/afpuc-2013-0004

This content is open access.