The CTEPH Registry was the first project run by the International CTEPH Association (formerly called “Association for Research in CTEPH”). This registry was a clinician-driven, multi-centre, prospective observational programme set-up to collect the medical history, diagnostic procedures and treatment of CTEPH patients.
Between February 2007 and January 2009, 679 consecutive patients newly diagnosed with CTEPH were prospectively enrolled in 26 European and 1 Canadian centres across 16 different countries. Patients were followed up until February 2012, to allow for a minimum observation period of 3 years.
First results from the CTEPH Registry have been published:
E. Mayer et al., Surgical management and outcome of patients with chronic thromboembolic pulmonary hypertension: Results from an international prospective registry. J. Thorac Cardiovas Surg 2011; 141; 702-10
J. Pepke Zaba et al., Chronic Thromboembolic Pulmonary Hypertension (CTEPH): Results From an International Prospective Registry. Circulation. 2011 Nov 1; 124 (18):1973-81
I. Lang et al., Factors associated with diagnosis and operability of chronic thromboembolic pulmonary hypertension – A case control study. Thromb Haemost 2013; 110: 83-91.
Results on long-term outcomes have been presented as an abstract at the ATS 2013 by G. Simonneau/M. Delcroix and have also been published as a full manuscript:
M. Delcroix et al., Long-term outcome of patients with chronic thromboembolic pulmonary hypertension (CTEPH): Results from an international prospective registry. Circulation 2016; 133:859-71
Further analyses of the data performed in collaboration with external investigators have also been published:
Klok FA et al., Determinants of diagnostic delay in chronic thromboembolic pulmonary hypertension: results from the European CTEPH Registry. Eur Respir J 2018; 52: 1801687
Barco S et al., Sex-specific differences in chronic thromboembolic pulmonary hypertension. Results from the European CTEPH registry. J Thromb Haemost 2020; 18: 151-161
The CTEPH Registry was supported by a research grant from Actelion Pharmaceuticals Ltd. Actelion did not participate in the registry management, the data analyses nor in the writing of manuscripts.