New International CTEPH Registry

In February 2015, the ICA launched a new registry to prospectively capture data on CTEPH patients worldwide. Until September 2016, 1010 consecutive patients newly diagnosed with CTEPH were prospectively enrolled in 34 centres across 20 countries. Patients were followed up until 30 September 2019, to allow for a minimum observation period of 3 years.

The  main objectives for this registry were to

  • assess the epidemiology of CTEPH, mode of diagnosis and treatment approaches worldwide
  • determine long-term outcomes as measured by NYHA and survival

Expert centres worldwide taking care of CTEPH patients participated in this registry. For a list of participating centres, please visit the registry’s entry on

Baseline results from the New International CTEPH Registry have been published:

S. Guth et al., Current strategies for managing chronic thromboembolic pulmonary hypertension: results of the worldwide prospective CTEPH Registry. ERJ Open Res 2021;7(3):00850-2020; DOI: 10.1183/23120541.00850-2020; available at

Analysis of long-term outcomes is ongoing; preliminary results have been presented at ERS 2021:

M. Delcroix et al., Current strategies for managing CTEPH.

The New International CTEPH Registry was funded by both Actelion Pharmaceuticals Ltd. and Bayer Pharma AG. The New International CTEPH Registry is registered on under NCT02656238.