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 Α Gatzoulis; Yue Li; Ariane Marelli

doi:10.1016/j.jacc.2021.03.012

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

J Am Coll Cardiol. 2021 May 4;77(17):2219-2235. doi: 10.1016/j.jacc.2021.03.012.

Authors

Affiliations

¹ Department of Cardiology III-Adult Congenital and Valvular Heart Disease, University Hospital Muenster, Muenster, Germany; Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton and Harefield National Health Service Foundation Trust, Imperial College London, London, UK; National Register for Congenital Heart Defects, Berlin, Germany. Electronic address: Gerhard.Diller@ukmuenster.de.
² Department of Cardiology III-Adult Congenital and Valvular Heart Disease, University Hospital Muenster, Muenster, Germany; Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton and Harefield National Health Service Foundation Trust, Imperial College London, London, UK; First Department of Cardiology, American Hellenic Educational Progressive Association University Hospital, School of Medicine, Faculty of Health Sciences, Aristotle University of Thessaloniki, Greece.
³ The Cincinnati Adult Congenital Heart Disease Program, Cincinnati Children's Hospital, Cincinnati, Ohio, USA; Heart Institute, Cincinnati Children's Hospital and University of Cincinnati, Cincinnati, Ohio, USA.
⁴ Department of Cardiology, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts, USA.
⁵ Department of Public Health and Primary Care, Katholieke Universiteit Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.
⁶ Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton and Harefield National Health Service Foundation Trust, Imperial College London, London, UK.
⁷ Pediatric Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center and Children's Health, Dallas, Texas, USA; Department of Radiology, University of Texas Southwestern Children's Medical Center, Dallas, Texas, USA.
⁸ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA; Montreal Heart Institute, Université de Montréal, Montreal, Québec, Canada.
⁹ Montreal Heart Institute, Université de Montréal, Montreal, Québec, Canada.
¹⁰ Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
¹¹ Department of Computer Science, McGill University, Montréal, Québec, Canada.
¹² McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), Department of Medicine, McGill University, Montréal, Québec, Canada. Electronic address: ariane.marelli@mcgill.ca.

PMID: 33926659
DOI: 10.1016/j.jacc.2021.03.012

Abstract

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.

Keywords: artificial intelligence; congenital heart disease; disease trajectories; lifespan; precision medicine; research.

Publication types

Research Support, N.I.H., Extramural
Review

MeSH terms

Cardiology*
Global Health
Heart Defects, Congenital / epidemiology*
Humans
Longevity*
Morbidity / trends
Periodicals as Topic*
Prospective Studies
Societies, Medical*

Grants and funding

UL1 TR001105/TR/NCATS NIH HHS/United States