New International CTEPH Database

New International CTEPH Database

The New International CTEPH Database is a prospective, observational multi-center disease registry run by the International CTEPH Association (ICA), which will collect data in chronic thromboembolic pulmonary hypertension (CTEPH) patients worldwide. The registry will run for approximately 5 years. Its objective is to provide an overview on epidemiology of CTEPH, mode of diagnosis and treatment approaches worldwide as well as determinants of long-term outcomes as measured by New York Heart Association (NYHA) functional class and survival.

The data collected will improve the knowledge and understanding of this condition, support the further development of diagnosis and treatment guidelines for patients with CTEPH, and contribute to improving patient care in the long-term.

Inclusion Criteria:

• Patients must be newly diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) (incident patients)

• Patients must have been treated with anti-coagulation for at least 3 months before diagnosis of CTEPH

• Patients must be willing to provide informed consent

• Patients must meet the following criteria for CTEPH:

  • Mean pulmonary artery pressure (PAP) ≥ 25 mmHg at rest
  • Abnormal VQ scan, pulmonary angiogram, computed tomography (CT) pulmonary angiogram, or magnetic resonance (MR) pulmonary angiogram confirming chronic thromboembolic disease as recommended by standard guidelines

Exclusion Criteria:

• None specified