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Placebo-controlled, randomized trials are currently recruiting in well-phenotyped subgroups of PH with unclear and/or multifactorial mechanisms, such as sarcoidosis-associated PH. 12 Definition of a pulmonary hypertension centre While PH is not an uncommon condition, severe forms of PH, especially PAH and CTEPH, require highly specialized management. Since medical centres with multidisciplinary teams and a high volume of patients generally offer best standard of care, which translates into better clinical outcomes, establishing PH centres is clinically and economically highly desirable and is supported by patient organizations and scientific societies. The purpose of a PH centre is to: receive new referrals; assess and investigate the cause of PH; carefully phenotype and routinely manage patients with medical, interventional, and surgical approaches; work closely with other health care providers to achieve the best outcomes for patients; undertake audits (reporting patient case mix and quality indicators); and be involved in clinical and translational research, and education. The requirements—comprising definition, multidisciplinary structure, number of cases, procedures, and staffing levels, as well as the skills and resources needed in a PH referral centre—are described below and in Figure 16. Criteria for paediatric and CTEPH centres are described elsewhere (Sections 7.8.3 and 10.3, respectively). Co-ordinated by a core MDT member responsible for the multidisciplinary approach Core MDT Extended MDT Social worker Study nurse Paediatric cardiologist Psychologist Adult CHD specialist Lung pathologist Hepatologist Physiotherapist Rheumatologist Intensive care specialist Thoracic radiologist Palliative care specialist Cardiac radiologist Lung transplant physician/surgeonc Clinical geneticist/ Genetic counsellorc At least 2 PH nurses Nurse specialist For diagnostic pulmonary angiography, embolization Interventional radiologist/cardiologist Cardiologist/Pneumologist At least 2 surgeons (ECMO) Cardiothoracic surgeon Case managerb Responsible for data collection, analysis, and organization of audit meetings Data manager MDT meeting Regular, to discuss multidisciplinary aspects of individual patient care Patient empowerment and advocacy Clear verbal, and written information for patients that describes diagnostic procedures and treatment options; shared decision-making; collaboration with advocacy group Interaction with external healthcare providers and other relevant stakeholders GP, local specialist, social services, rehabilitation centres, national health services, labs, insurers, school, work, sport club, psychologist, etc. Quality control/Audits Data collection/registration; monitoring of quality indicators; regular internal audits Research, training, and education Involvement in clinical and translational research: teaching courses on local, national, or international basis Patient care pathway and clinical management protocol Steps from diagnosis to follow-up including advanced disease, palliative stage, and end of life At least 2 PH specialists treating a sufficient number of patientsa Responsible for the co-ordination of care on patient level Gynaecologist/ Obstetrician Cardiothoracic anaesthetist Processes Pulmonary hypertension centre working 50% on PH care Figure 16 Pulmonary hypertension centre schematic. CHD, congenital heart disease; ECMO, extracorporeal membrane oxygenation; GP, general practitioner; MDT, multidisciplinary team; PH, pulmonary hypertension. aNumber adapted according to specific country characteristics. bCase manager can be a nurse specialist, social worker, physiotherapist, or administrative assistant in function of the centre organization. cCan be located in partner centres. Adapted from Biganzoli et al.846 Downloaded from academic.oup.com/eurheartj/article/43/38/3618/6673929 by guest on 07 October 2026