Association for Pediatric Pulmonary Hypertension (PePH)
The Association for Pediatric Pulmonary Hypertension (PePH) was founded in April 2007 with the mission of conducting epidemiological research on Pulmonary Hypertension in children and adolescents.
The goal of this research is to improve the diagnosis and prognosis of PH in children and young adults and thus the clinical outcome and long-term care for affected patients. In order to reach this goal, the Association has established a disease registry, called TOPP (Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension). In July 2015, the first phase of the registry has closed after including 699 patients, of which over 50% were newly diagnosed patients. Data from TOPP have been successfully published and further manuscripts are in preparation. Just after closing the first phase, a new registry, called TOPP-2, has been started, which will include children and adolescents newly diagnosed with PH as well as incident patients from the first TOPP registry. The Registry is driven by the Executive Board of the Association, constituted of physicians specialized in the treatment of pediatric PH. Scientific and medical aspects of the Registry are also governed by the Executive Board. For further information on the registry please see the TOPP-2 Registry page.
Physicians and other medical personnel with interest and/or experience in managing pediatric patients with PH are encouraged to become a member of the Association for PePH.