In February 2015, the ICA has launched a new registry to prospectively capture data on CTEPH patients worldwide.

The  main objective for this registry are to

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

Funding of the New International CTEPH Registry has been secured by the financial support of both Actelion Pharmaceuticals Ltd. and Bayer Pharma AG. The New International CTEPH Registry is registered on clinicaltrials.gov under NCT02656238.

Expert centres worldwide taking care of CTEPH patients are participating in this registry. The initialisation of sites has been completed. For a list of participating centres, please visit the registry’s entry on clinicaltrials.gov.

Participating sites can access the New International CTEPH Registry here and the training platform here.