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 clinicaltrials.gov.

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