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

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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.

National Pulmonary Hypertension Centres of the UK and Ireland. Consensus statement on the management of pulmonary hypertension in clinical practice in the UK and Ireland. Heart 94, 2008:1-41.

Galie N, Hoeper MM, Humbert M. et al. Guidelines for the diagnosis and treatment of pulmonary hypertension. Eur Heart J. 30, 20, 2009:2493-2537.

European Pharmaceutical Journal

Acta Facultatis Pharmaceuticae Universitatis Comenianae (formerly)

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CiteScore 2016: 0.28

SCImago Journal Rank (SJR) 2015: 0.195
Source Normalized Impact per Paper (SNIP) 2015: 0.202

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