Pediatric and Congenital Cardiovascular Disease Research Challenges and Opportunities: JACC Review Topic of the Week

Alexander R Opotowsky; Kiona Y Allen; Emily M Bucholz; Kristin M Burns; Pedro Del Nido; Kathleen N Fenton; Bruce D Gelb; James N Kirkpatrick; Shelby Kutty; Linda M Lambert; Keila N Lopez; Laura J Olivieri; Nathan M Pajor; Sara K Pasquali; Christopher J Petit; Erica Sood; John M VanBuren; Gail D Pearson; Shelley D Miyamoto

doi:10.1016/j.jacc.2022.09.032

Pediatric and Congenital Cardiovascular Disease Research Challenges and Opportunities: JACC Review Topic of the Week

J Am Coll Cardiol. 2022 Dec 6;80(23):2239-2250. doi: 10.1016/j.jacc.2022.09.032.

Authors

Alexander R Opotowsky¹, Kiona Y Allen², Emily M Bucholz³, Kristin M Burns⁴, Pedro Del Nido⁵, Kathleen N Fenton⁴, Bruce D Gelb⁶, James N Kirkpatrick⁷, Shelby Kutty⁸, Linda M Lambert⁹, Keila N Lopez¹⁰, Laura J Olivieri¹¹, Nathan M Pajor¹², Sara K Pasquali¹³, Christopher J Petit¹⁴, Erica Sood¹⁵, John M VanBuren¹⁶, Gail D Pearson⁴, Shelley D Miyamoto¹⁷

Affiliations

¹ Department of Pediatrics, Heart Institute, Cincinnati Children's Hospital, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA. Electronic address: sasha.opotowsky@cchmc.org.
² Department of Pediatrics, Division of Cardiology, Ann & Robert H. Lurie Children's Hospital of Chicago, Feinberg Northwestern University School of Medicine, Chicago, Illinois, USA.
³ Department of Cardiology, Boston Children's Hospital, Boston, Massachusetts, USA.
⁴ Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, Bethesda, Maryland, USA.
⁵ Department of Cardiac Surgery, Boston Children's Hospital, Boston, Massachusetts, USA.
⁶ Mindich Child Health and Development Institute, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
⁷ Department of Medicine and Department of Bioethics & Humanities, University of Washington Medical Center, Seattle, Washington, USA.
⁸ Department of Pediatrics, The Blalock-Taussig-Thomas Pediatric and Congenital Heart Center, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
⁹ Division of Pediatric Cardiothoracic Surgery, University of Utah, Salt Lake City, Utah, USA.
¹⁰ Department of Pediatrics, Lillie Frank Abercrombie Section of Pediatric Cardiology, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas, USA.
¹¹ Department of Pediatric Cardiology, University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA.
¹² Division of Pulmonary Medicine, Cincinnati Children's Hospital, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
¹³ Division of Pediatric Cardiology, University of Michigan C.S. Mott Children's Hospital, Ann Arbor, Michigan, USA.
¹⁴ Department of Pediatrics, Division of Pediatric Cardiology, Columbia University Vagelos College of Physicians and Surgeons, Morgan Stanley Children's Hospital, NewYork-Presbyterian, New York, New York, USA.
¹⁵ Nemours Cardiac Center and Division of Behavioral Health, Nemours Children's Health, Wilmington, Delaware, USA.
¹⁶ Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah, USA.
¹⁷ Department of Pediatrics, University of Colorado Anschutz Medical Campus, Children's Hospital Colorado, Aurora, Colorado, USA. Electronic address: shelley.miyamoto@childrenscolorado.org.

PMID: 36456054
DOI: 10.1016/j.jacc.2022.09.032

Abstract

The National Heart, Lung, and Blood Institute convened a workshop in August 2021 to identify opportunities in pediatric and congenital cardiovascular research that would improve outcomes for individuals with congenital heart disease across the lifespan. A subsidiary goal was to provide feedback on and visions for the Pediatric Heart Network. This paper summarizes several key research opportunities identified in the areas of: data quality, access, and sharing; aligning cardiovascular research with patient priorities (eg, neurodevelopmental and psychological impacts); integrating research within clinical care and supporting implementation into practice; leveraging creative study designs; and proactively enriching diversity of investigators, participants, and perspectives throughout the research process.

Keywords: collaborative science; congenital heart disease; lifespan; outcomes; research.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

Cardiovascular Diseases* / therapy
Child
Data Accuracy
Heart
Humans
Longevity
Research Design