The PePH Association is dedicated to advancing the diagnostics and management of care in children in order to achieve the ultimate goal of improved prognosis and survival. As a starting point, the first task was to understand the current standards of care and methods used worldwide in pediatric PH, and how this translates to disease outcome. Thus, the TOPP-1 registry was launched, followed by the ongoing TOPP-2 registry. Many key learnings arose from the TOPP-1 analysis, which were shared in multiple publications. In addition, unmet research needs were identified which led to the development of novel research projects that are ongoing today.
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