Longitudinal follow-up studies in the pediatric heart network

Lynn Mahony, Lynn A. Sleeper, Gail D. Pearson

Research output: Chapter in Book/Report/Conference proceedingChapter


To promote collaborative research leading to evidence-based treatment options for pediatric patients with congenital and acquired heart disease, the National Heart, Lung, and Blood Institute established the Pediatric Heart Network (PHN) in 2001. The infrastructure is now well-developed and capable of implementing complex, multicenter protocols efficiently and recruiting subjects effectively. In addition, we have developed mechanisms to retain subjects and have established several cohorts that we are following long-term. The purpose of this chapter is to describe the structure of the PHN and to review studies relevant to longitudinal patient outcome. The PHN is uniquely positioned to contribute to the body of knowledge regarding evidenced-based treatment approaches for pediatric patients with cardiovascular disease.

Original languageEnglish (US)
Title of host publicationPediatric and Congenital Cardiac Care: Volume 1: Outcomes Analysis
PublisherSpringer-Verlag London Ltd
Number of pages10
ISBN (Print)9781447165873, 9781447165866
StatePublished - Jan 1 2015


  • Cardiomyopathy in children
  • Congenital heart disease
  • Congenital heart surgery
  • Outcomes
  • Pediatric clinical research
  • Randomized clinical trials
  • Single ventricle

ASJC Scopus subject areas

  • Medicine(all)


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