Design of a multi-institutional neurocognitive discovery study in adult congenital heart disease (MINDS-ACHD).

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.

"How to" operate a pediatric neuropsychology practice during the COVID-19 pandemic: Real tips from one practice's experience.

This paper aims to provide pediatric neuropsychologists with suggested processes and procedures to continue to provide neuropsychology services during the COVID-19 global pandemic. Our practice is located within an academic medical center/children's hospital, and setting-specific recommendations may not extend to all practices, though our hope is that others find guidance from our approach to providing pediatric neuropsychology evaluations when physical distancing is required. With consideration of ethics, equity, and assessment validity, we provide suggestions for a) modifying practices around seeing patients during COVID-19, b) tele-health for the pediatric neuropsychologist, c) safety standards and requirements, and d) working with special populations (e.g., Autism Spectrum Disorder, bilingual populations, immunocompromised patients, and acute inpatient assessment).