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I am delighted to write the foreword for this consensus statement which updates the “Recommendations on the management of pulmonary hypertension in clinical practice” of 2001. The consensus statement reflects contemporary practice in the management of this uncommon, deadly but now treatable condition in the pulmonary hypertension designated centres in the UK and Ireland. It matches and complements international guidelines, which are currently under revision.
In addition to health professionals who encounter affected patients within national centres or in other fields of practice, the statement is a comprehensive but readily accessible source of information for commissioners and managers of specialised services.
Initially the evidence on which to base the care of patients with rare and deadly diseases often rests on the experience and judgement of those who deliver daily care, the collection of clinical, epidemiological and pathological data, and the assiduous construction of informative registers. This familiar discipline has enabled the advances summarised in this document.
The first challenge to health service commissioners is to ensure that all patients with pulmonary hypertension have access to appropriate therapy as quickly as possible. Delay in making the diagnosis has the same consequences as delay in those with cancer. Regrettably “postcode prescribing” and its consequences still persist.
As for other uncommon conditions, continued progress in developing effective therapies rests on specialised centres working in concert to develop and participate in well-designed clinical trials, particularly trials of combination therapy.
This statement is a testament to the major advances in therapy made over the last 10 years, progress those of us who have cared for such patients over more than 30 years could not have envisaged.
Professor Dame Carol M Black DBE, MD, FRCP, MACP, FMEDSCT
Gerry Coghlan, Royal Free Hospital, London, UK
Paul A Corris (Co-editor), Freeman Hospital, Newcastle, UK
Sean Gaine, Mater Misericordae, …
Funding: The consensus meeting was sponsored by the patients’ association, PHA-UK. The publication costs of this document have been met by unrestricted educational grants from Actelion Pharmaceuticals, Encysive Pharmaceuticals, GlaxoSmithKline, LungRx, Pfizer, and Bayer Schering Pharma.
Competing interests: Iain Armstrong has received honoraria for lecturing and travel grants for conferences from Actelion, Schering and Encysive and is a member of the Nurse Advisory Board for Actelion. Dame Carol Black has been an advisor to Actelion, Cambridge Antibody Technology, Genzyme, and Merck & Co. Gerry Coghlan has received financial support from Actelion for nurse specialist, audit work, consultancy service, lecturing and support for congress attendance; Lilly-Icos for consultancy service; Pfizer for lecturing; Schering for nurse specialist financial support and consultancy services. Paul Corris has been a member of advisory boards for Actelion, Encysive and Pfizer and has received honoraria for lecturing from Actelion, Pfizer and Schering. Agnes Crozier is on the Nurse Advisory board for Actelion and has received travel grants for conferences from Pfizer and Actelion. Julia De Soyza has received travel grants from Actelion, Schering and Encysive and is a member of the Nurse Advisory Board for Actelion. Charlie Elliott has received honoraria for lectures from Actelion and travel grants from Actelion and Schering. Sean Gaine has been a member of advisory boards for Actelion, GlaxoSmithKline, Encycisive and Pfizer and has received honoraria for lecturing from Actelion, GlaxoSmithKline, Encysive, and Schering. The PH Unit has received contributions to research funds from Pfizer, Schering, Actelion and GlaxoSmithKline. Michael A Gatzoulis has received honoraria for lecturing and advisory board meetings and unrestricted educational grants from Actelion and Pfizer. Simon Gibbs has been a member of advisory boards for Actelion, GlaxoSmithKline, Pfizer and Encysive and has received honoraria for lecturing from Actelion, GlaxoSmithKline and Schering. Wendy Gin-Sing is a member of the nurse advisory board for Actelion and has received grants to attend conferences from Actelion, Pfizer, Schering, Encysive, United Therapeutics and GlaxoSmithKline, and honoraria for lecturing from Actelion, Encysive and United Therapeutics. Clive Handler has received travel grants for conferences from Actelion and Encysive. Luke Howard has received travel grants and lecture fees from Actelion and GlaxoSmithKline. Sheila G Haworth has received consulting fees from Actelion, and accepting honoraria from Pfizer. The PH unit has received support for the clinical service from Actelion and GSK. Rodney Hughes has received honoraria for lecturing and travel grants from Actelion, Schering and United Therapeutics. Martin Johnson has received travel grants for conferences from Actelion, GlaxoSmithKline and Encysive. David G Kiely is a member of advisory boards for Actelion, Pfizer and Encysive Pharmaceuticals and has received honoraria for lecturing from Actelion, Schering, Pfizer and United Therapeutics. Jim Lordan has been a member of an advisory board for Encysive and has received travel grants and honoraria from Encysive. Nicholas Morrell has received honoraria for educational lectures from Actelion, United Therapeutics and GlaxoSmithKline, and has received research funding from Actelion and Novartis. Andrew Peacock is on the advisory boards for Actelion, Pfizer, GSK and Encysive, and has received lecture fees from Actelion, Pfizer, GSK and Encysive. Joanna Pepke-Zaba is a member of advisory board for Actelion and Pfizer, and has received honoraria for lecturing from Actelion and Schering. Karen Sheares has received travel grants for educational meetings/conferences from Actelion, GlaxoSmithKline and United Therapeutics. Martin Wilkins has received contributions to research funds from Pfizer and Actelion and honoraria from Pfizer, Actelion, GlaxoSmithKline and Encysive. John Wort has received contributions for research funds and travel grants from Actelion.