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Design of a multi-institutional neurocognitive discovery study in adult congenital heart disease (MINDS-ACHD). Am Heart J 2023 Aug;262:131-139



Pubmed ID




Scopus ID

2-s2.0-85159560853 (requires institutional sign-in at Scopus site)   2 Citations


BACKGROUND: Neurocognitive dysfunction (NCD) is a common comorbidity among children with congenital heart disease (CHD). However, it is unclear how underlying CHD and its sequelae combine with genetics and acquired cardiovascular and neurological disease to impact NCD and outcomes across the lifespan in adults with CHD.

METHODS: The Multi-Institutional Neurocognitive Discovery Study in Adults with Congenital Heart Disease (MINDS-ACHD) is a partnership between the Pediatric Heart Network (PHN) and the Adult Alliance for Research in Congenital Cardiology (AARCC) that examines objective and subjective neurocognitive function and genetics in young ACHD. This multicenter cross-sectional pilot study is enrolling 500 young adults between 18 and 30 years with moderate or severe complexity CHD at 14 centers in North America. Enrollment includes 4 groups (125 participants each): (1) d-looped Transposition of the Great Arteries (d-TGA); (2) Tetralogy of Fallot (TOF); (3) single ventricle (SV) physiology; and (4) "other moderately or severely complex CHD." Participants complete the standardized tests from the NIH Toolbox Cognitive Battery, the NeuroQoL, the Hospital Anxiety and Depression Scale, and the PROMIS Global QoL measure. Clinical and demographic variables are collected by interview and medical record review, and an optional biospecimen is collected for genetic analysis. Due to the COVID-19 pandemic, participation may be done remotely. Tests are reviewed by a Neurocognitive Core Laboratory.

CONCLUSIONS: MINDS-ACHD is the largest study to date characterizing NCD in young adults with moderate or severely complex CHD in North America. Its results will provide valuable data to inform screening and management strategies for NCD in ACHD and improve lifelong care.

Author List

Cohen S, Gurvitz M, Burns KM, Wheaton O, Panigrahy A, Umfleet L, Loman M, Brown N, Cotts T, Ermis P, Fernandes S, Gaydos S, Hoskoppal A, Lindsay I, Markham LW, Nyman A, Rodriguez FH 3rd, Smith CC, Stylianou M, Trachtenberg F, Zaidi AN, Pediatric Heart Network (PHN) Investigators and the Alliance for Adult Research in Congenital Cardiology (AARCC)


Michelle Loman Moudry PhD Assistant Professor in the Neurology department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Cross-Sectional Studies
Heart Defects, Congenital
Noncommunicable Diseases
Pilot Projects
Quality of Life
Transposition of Great Vessels
Young Adult