Lifespan Perspective on Congenital Heart Disease Research: JACC State-of-the-Art Review

Gerhard Paul Diller, Alexandra Arvanitaki, Alexander R. Opotowsky, Kathy Jenkins, Philip Moons, Alexander Kempny, Animesh Tandon, Andrew Redington, Paul Khairy, Seema Mital, Michael Gatzoulis, Yue Li, Ariane Marelli

Research output: Contribution to journalReview articlepeer-review

19 Scopus citations


More than 90% of patients with congenital heart disease (CHD) are nowadays surviving to adulthood and adults account for over two-thirds of the contemporary CHD population in Western countries. Although outcomes are improved, surgery does not cure CHD. Decades of longitudinal observational data are currently motivating a paradigm shift toward a lifespan perspective and proactive approach to CHD care. The aim of this review is to operationalize these emerging concepts by presenting new constructs in CHD research. These concepts include long-term trajectories and a life course epidemiology framework. Focusing on a precision health, we propose to integrate our current knowledge on the genome, phenome, and environome across the CHD lifespan. We also summarize the potential of technology, especially machine learning, to facilitate longitudinal research by embracing big data and multicenter lifelong data collection.

Original languageEnglish (US)
Pages (from-to)2219-2235
Number of pages17
JournalJournal of the American College of Cardiology
Issue number17
StatePublished - May 4 2021


  • artificial intelligence
  • congenital heart disease
  • disease trajectories
  • lifespan
  • precision medicine
  • research

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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