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


ABSTRACT: 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.

SUBMITTER: Panigrahy A 

PROVIDER: S-EPMC10532244 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature

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

Panigrahy Ashok A   Schmithorst Vanessa V   Ceschin Rafael R   Lee Vince V   Beluk Nancy N   Wallace Julia J   Wheaton Olivia O   Chenevert Thomas T   Qiu Deqiang D   Lee James N JN   Nencka Andrew A   Gagoski Borjan B   Berman Jeffrey I JI   Yuan Weihong W   Macgowan Christopher C   Coatsworth James J   Fleysher Lazar L   Cannistraci Christopher C   Sleeper Lynn A LA   Hoskoppal Arvind A   Silversides Candice C   Radhakrishnan Rupa R   Markham Larry L   Rhodes John F JF   Dugan Lauryn M LM   Brown Nicole N   Ermis Peter P   Fuller Stephanie S   Cotts Timothy Brett TB   Rodriguez Fred Henry FH   Lindsay Ian I   Beers Sue S   Aizenstein Howard H   Bellinger David C DC   Newburger Jane W JW   Umfleet Laura Glass LG   Cohen Scott S   Zaidi Ali A   Gurvitz Michelle M  

Journal of cardiovascular development and disease 20230906 9


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 s  ...[more]

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