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TOPP: The First Multinational Registry in Pediatric Pulmonary Hypertension

Robyn Barst


Maurice Beghetti


R. M. F. Berger


Tilman Humpl

G. Raskob

Ingram Schulze-Neick


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Conference: 2008 International PHA Conference and Scientific Sessions

Release Date: 06.20.2008

Presentation Type: Abstracts

Barst R.J.1, Beghetti M.2, Berger R.M.F.3, Humpl T.4, Raskob G.5, Schulze-Neick I.6

1. Columbia University College of Physicians & Surgeons, New York, NY, USA
2. University Hospital, Geneva, Switzerland
3. University Medical Center Groningen/Beatrix Children’s Hospital, University of Groningen, The Netherlands
4. Hospital for Sick Children, Toronto, Canada
5. University of Oklahoma, Oklahoma City, OK, USA
6. Great Ormond Street Hospital, London, UK

BACKGROUND: Although there have been recent advances in the understanding and treatment of pulmonary hypertension (PH) in adults, the natural history and epidemiology of the disease remain poorly understood in children. There is, therefore, a clinical need to characterize the PH observed in the pediatric population and identify how it compares to that seen in adults.

METHODS: In January 2008, TOPP (Tracking Outcomes and Practice in Pediatric PH), the first international, prospective, observational program focusing on pediatric PH was initiated. This program aims to enroll up to 450 children aged between 3 months and 18 years at 39 specialized centers from 22 countries in 4 continents. Patients with previously and newly diagnosed PH confirmed by right heart catheterization will be included and followed for at least three years. The main objectives of the registry are to describe the demographic and clinical characteristics of PH in children, to describe the effectiveness of medical treatment and to assess disease management patterns in a real-world setting.

RESULTS: The design of the TOPP registry will enable any possible risk factors to be identified and the clinical course of disease progression to be recorded. 

CONCLUSIONS: Novel, well-defined data are expected from the TOPP registry, due to its comprehensive design and content, as well as its broad geographic coverage. This information will address the evolving research needs of the pediatric PH community and assist in the development of new treatment regimes.