Journal of Cardiovascular Development and Disease (Sep 2023)

Design and Harmonization Approach for the Multi-Institutional Neurocognitive Discovery Study (MINDS) of Adult Congenital Heart Disease (ACHD) Neuroimaging Ancillary Study: A Technical Note

  • Ashok Panigrahy,
  • Vanessa Schmithorst,
  • Rafael Ceschin,
  • Vince Lee,
  • Nancy Beluk,
  • Julia Wallace,
  • Olivia Wheaton,
  • Thomas Chenevert,
  • Deqiang Qiu,
  • James N Lee,
  • Andrew Nencka,
  • Borjan Gagoski,
  • Jeffrey I. Berman,
  • Weihong Yuan,
  • Christopher Macgowan,
  • James Coatsworth,
  • Lazar Fleysher,
  • Christopher Cannistraci,
  • Lynn A. Sleeper,
  • Arvind Hoskoppal,
  • Candice Silversides,
  • Rupa Radhakrishnan,
  • Larry Markham,
  • John F. Rhodes,
  • Lauryn M. Dugan,
  • Nicole Brown,
  • Peter Ermis,
  • Stephanie Fuller,
  • Timothy Brett Cotts,
  • Fred Henry Rodriguez,
  • Ian Lindsay,
  • Sue Beers,
  • Howard Aizenstein,
  • David C. Bellinger,
  • Jane W. Newburger,
  • Laura Glass Umfleet,
  • Scott Cohen,
  • Ali Zaidi,
  • Michelle Gurvitz

DOI
https://doi.org/10.3390/jcdd10090381
Journal volume & issue
Vol. 10, no. 9
p. 381

Abstract

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Dramatic advances in the management of congenital heart disease (CHD) have improved survival to adulthood from less than 10% in the 1960s to over 90% in the current era, such that adult CHD (ACHD) patients now outnumber their pediatric counterparts. ACHD patients demonstrate domain-specific neurocognitive deficits associated with reduced quality of life that include deficits in educational attainment and social interaction. Our hypothesis is that ACHD patients exhibit vascular brain injury and structural/physiological brain alterations that are predictive of specific neurocognitive deficits modified by behavioral and environmental enrichment proxies of cognitive reserve (e.g., level of education and lifestyle/social habits). This technical note describes an ancillary study to the National Heart, Lung, and Blood Institute (NHLBI)-funded Pediatric Heart Network (PHN) “Multi-Institutional Neurocognitive Discovery Study (MINDS) in Adult Congenital Heart Disease (ACHD)”. Leveraging clinical, neuropsychological, and biospecimen data from the parent study, our study will provide structural–physiological correlates of neurocognitive outcomes, representing the first multi-center neuroimaging initiative to be performed in ACHD patients. Limitations of the study include recruitment challenges inherent to an ancillary study, implantable cardiac devices, and harmonization of neuroimaging biomarkers. Results from this research will help shape the care of ACHD patients and further our understanding of the interplay between brain injury and cognitive reserve.

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