A place for facts and information about Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
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The information provided on this site is intended for people living with CTEPH or those caring for someone with CTEPH
Any patient with suspected CTEPH must be referred to an expert center for diagnosis, operability assessment, and treatment.1 Due to the often rapid progression of the disease,2 referral should be made immediately.
Referral centers provide care from a multidisciplinary team consisting of:
A consultant cardiologist
Respiratory medicine physicians
Clinical nurse specialists
In the case of pulmonary endarterectomy (PEA) centers, surgeons.
Ideally, patients will also have access to psychological and social work support. The guidelines define a referral center for pulmonary hypertension (PH) as a center that follows at least 50 patients with pulmonary arterial hypertension (PAH) or CTEPH, and receives at least two new referrals with documented PAH or CTEPH per month.3
Generally, a patient should not be considered inoperable unless they have been evaluated at an expert center that has significant experience with the procedure1 and with good surgical and hemodynamic outcomes.
Our resources page contains a range of material to help with the identification, diagnosis and management of CTEPH.
A list of expert centers can be found here.
1.Jenkins D et al. Eur Respir Rev 2012;21:32–9. 2.Pengo V et al. N Engl J Med 2004;350:2257–64. 3.Galiè N et al. Eur Respir J 2015;46:903–75. 4.Tiede H et al. Eur Respir J 2012;40(Suppl 56):A3281.