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.
First results on long-term outcome have been presented at the ATS 2013 by G. Simonneau/M. Delcroix. A manuscript is under preparation.
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.