Longitudinal Follow-Up Studies in the Pediatric Heart Network

Chapter

Abstract

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.

Keywords

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

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Copyright information

© Springer-Verlag London 2015

Authors and Affiliations

  • Lynn Mahony
    • 1
  • Lynn A. Sleeper
    • 2
  • Gail D. Pearson
    • 3
  1. 1.CMC CardiologyUniversity of Texas Southwestern Medical CenterDallasUSA
  2. 2.New England Research InstitutesWatertownUSA
  3. 3.Division of Cardiovascular SciencesNHLBI/NIHBethesdaUSA

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