The UK National Pulmonary Hypertension Service, Registry and Research Collaboration

Abstract

[first paragraph of article]

The advent of targeted therapies for idiopathic pulmonary hypertension, with an initial focus on prostaglandins and endothelin antagonists, mandated the planning and development of a service that could evaluate and manage patients with this orphan disease in the United Kingdom (UK). Accordingly, a small group of interested physicians met to debate the model of service delivery that was best suited to the UK and its National Health Service (NHS) at the Royal College of Physicians in London. There was a uniform view, given the rarity of the disorder, its complexity and the anticipated cost of therapy to the NHS, that a model of a limited number of specialist centres working in a collaborative way would offer best value and quality care for patients.