The International CTEPH Association was founded in 2006 as the “Association for Research in CTEPH”, with the goal of conducting epidemiological research into this uncommon and poorly understood disease. Between 2007 and 2009, the Association conducted a registry including close to 700 newly diagnosed CTEPH patients in 27 centres across Europe and Canada. All patients were followed-up for at least 3 years before registry closure in early 2012. Results can be viewed in the Publications section.
In June 2014, the International CTEPH Conference (ICC) 2014 took place in Paris at Les Cordeliers, attracting many participants and making it the largest gathering of experts active in the field of CTEPH to date. This event marked the introduction of the pilot interactive CTEPH Image Consultation Community, an exchange platform initiated by the International CTEPH Association with the financial support of Bayer HealthCare Pharmaceuticals. The platform is a physician-driven, online network enabling specialists and centres to collaborate and share their knowledge in a secure and accessible environment. The platform has been successfully launched in July 2015.
The start of 2015 saw the successful launch of the successor to the CTEPH disease registry by the ICA. The New International CTEPH Registry recruits patients from around the world, and addresses new developments in the area of CTEPH since the launch of the previous registry, such as the increasing use of balloon pulmonary angioplasty (BPA). The registry will run for at least 3 years, with an inclusion period of at least 2 years. The data collected will improve global knowledge and understanding of CTEPH, supporting the further advancement in diagnosis and treatment guidelines for CTEPH patients.