What is the PePH Association

The Association for Pediatric Pulmonary Hypertension (PePH) is a nonprofit organization that was founded in April 2007, with the mission of conducting epidemiological research on pulmonary hypertension (PH) 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 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, known as TOPP-2, has been started, which includes children and adolescents newly diagnosed with PH as well as incident patients from the first TOPP registry.

PePH projects are driven by the Executive Board of the Association (please see below), constituting of physicians specialized in the treatment of pediatric PH. Scientific and medical aspects of the registries and other projects 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.

Rolf Berger – Chairman of the PePH

• Pediatric Cardiology, Beatrix Children's Hospital, University Medical Center Groningen, P.O. Box 30.001, 9700 RB Groningen, Netherlands, r.m.f.berger@umcg.nl
• Professor for pediatrics
• Research interest: pediatric pulmonary vascular disease and right ventricular adaptation; clinical and experimental research, with special attention to translational aspects
• Leisure pursuit: road cycling

Dunbar Ivy – Deputy of the PePH

• University of Colorado Denver School of Medicine, Children's Hospital Colorado, 13123 East 16th Avenue, Box 100, Aurora, CO 80045, US, dunbar.ivy@childrenscolorado.org
• Selby's Chair in Pediatric Cardiology
• Research interests: proteomics, imaging, and treatment of PH
• Leisure pursuit: hiking

Tilman Humpl – Treasurer of the PePH

• The Hospital for Sick Children, Division of Critical Care Medicine, 555 University Avenue, Toronto, Ontario M5G 1XB, Canada, tilman.humpl@sickkids.ca
• Director of the Critical Care Residency Program
• Associate Professor at the University of Toronto
• Department of Critical Care Medicine, Division of Cardiology, Toronto, ON, Canada
• Research interests: pulmonary hypertension, cardiac critical care, mechanical circulatory support

Maurice Beghetti – Assessor of the PePH

• Unité de Cardiologie Pédiatrique, Hôpital des Enfants, 6 rue Willy Donzé, 1211 Genève 14, Switzerland, maurice.beghetti@hcuge.ch
• Directeur du Centre Universitaire de Cardiologie et Chirurgie Cardiaque Pédiatrique and Congenital Heart Center (CHUV and HUG)
• Head of Pediatric Subspecialties Division (HUG)
• Head of Pediatric Cardiology Unit (HUG)
• Director Pulmonary Hypertension Program (HUG)

Damien Bonnet – Secretary of the PePH

• Hôpital Necker, Université Paris Descartes, Sorbonne, Paris Cité, France, damien.bonnet@nck.aphp.fr
• Head of the department for Congenital Cardiology and Pediatrics
• Research interests: genetics of pediatric cardiac diseases, therapeutic strategies in PH
• Leisure pursuit: comics, sailing

Prof. Dr. Robyn Barst, founding member of the Association of PePH passed away on April 19, 2013. Robyn was one of the early builders of the pulmonary hypertension field. In addition to many other duties, she served as member of the Executive Board of the PePH Association since its foundation in 2007.

Please select the following link to access the bylaws of the PePH Association: