The Cardiac Neurodevelopmental Outcome Collaborative’s Steering Committee is responsible for oversight of activities of CNOC to ensure that the work being performed by the CNOC Officers, Steering Committee and Standing Committees is consistent with the vision and mission of the society, including these components:
Co-Chairs
 Caren Goldberg MD MS Michigan Medicine cgoldber@med.umich.edu |
Caren Goldberg is a professor of pediatric cardiology at the University of Michigan. She serves as the medical director for the Cardiac Neurodevelopmental Follow-up program and the co-director of the Michigan Congenital Heart Outcomes Research and Discovery (MCHORD) for the University of Michigan Congenital Heart Center. Her research interests are focused on methods to improve long-term outcomes, including neurodevelopmental and quality of life outcomes, for children with congenital heart disease. Dr. Goldberg serves as one of the principal investigators at the University of Michigan for the work of the NHLBI funded Pediatric Heart Network. She is extremely enthusiastic about the growth of collaboration in our field and the progress of the Cardiac Neurodevelopmental Outcomes Collaborative as this will enable us to more quickly answer questions, understand best practices to optimize neurodevelopmental outcomes and advance care for children with congenital heart disease. |
 Erica Sood PhD Nemours/A.I. duPont Hospital for Children erica.sood@nemours.org |
Dr. Sood is a pediatric psychologist at Nemours/A.I. duPont Hospital for Children and Associate Professor of Pediatrics at Thomas Jefferson University. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and trains psychology residents and fellows in the specialty area of cardiac neurodevelopment. Dr. Sood’s research focuses on neurodevelopmental outcomes, developmental care and family psychosocial interventions for congenital heart disease. She is the principal investigator for a grant-funded project which will engage stakeholders in the development of a family-based psychosocial care model for congenital heart disease using online crowdsourcing methods. Dr. Sood is also on the editorial board for Clinical Practice in Pediatric Psychology and co-leads the Patient/Family Support learning lab within the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). |
Co-Vice Chairs
 Adam R. Cassidy PhD ABPP-CN Boston Children’s Hospital adam.cassidy@childrens.harvard.edu |
Adam R. Cassidy is Staff Neuropsychologist at Boston Children’s Hospital and Instructor in Psychology at Harvard Medical School. He is board certified in clinical neuropsychology by the American Board of Professional Psychology. Dr. Cassidy is a scientist-practitioner whose research focuses on characterizing neurobehavioral and psychosocial outcomes among children and adolescents with some of the most severe forms of critical congenital heart disease (CHD) including dextro-transposition of the great arteries, tetralogy of Fallot, and single-ventricle cardiac conditions such as hypoplastic left heart syndrome. In addition to research, Dr. Cassidy is very active in clinical neuropsychological assessment and consultation with children and families affected by CHD. |
 Thomas A. Miller DO Maine Medical Center tamiller@mmc.org |
Dr. Miller is a pediatric cardiologist at Maine Medical Center and Division Director of Pediatric Cardiology. He previously developed and directed the Heart Center Neurodevelopmental Program at the University of Utah and Primary Children’s Hospital. He continues to be Adjunct Faculty at the University of Utah, collaborating on research initiatives regarding cardiac neurodevelopment and neonatal neurobehavior. He is a co-investigator in NHLBI-sponsored Pediatric Cardiac Genomics Consortium (PCGC) and Pediatric Heart Network (PHN) research activity. Dr. Miller’s clinical interests include fetal cardiology, echocardiography and general pediatric cardiology. |
Secretary
 Kelly Wolfe PhD Children’s Hospital of Colorado kelly.wolfe@childrenscolorado.org |
Dr. Wolfe is a pediatric neuropsychologist at the University of Colorado School of Medicine, and the director of the Cardiac Neurodevelopmental Follow-Up Program at Children’s Hospital Colorado (CHCO). Her responsibilities include developing and implementing clinical protocols, research studies, and outreach education for patients, families, and providers regarding neurodevelopmental sequelae in complex congenital heart disease (CHD). Her current research projects include examining the effects of hypoxemia on neurodevelopment in complex CHD, as well as the interplay between neurodevelopment and end organ functioning in the post-Fontan population. Dr. Wolfe also directs the cardiology rotation for the neuropsychology training program at CHCO. Her educational background includes earning a PhD in clinical psychology from the University of Alabama at Birmingham, and completing residency and post-doctoral specialty training in pediatric neuropsychology at Nationwide Children’s Hospital in Columbus, Ohio. Dr. Wolfe is passionate about advancing neurodevelopmental research and clinical care in complex CHD. |
Treasurer
 Melissa Duva MSN CCRN Nemours/A.I. duPont Hospital for Children melissa.duva@nemours.org |
Melissa Duva holds her BSN and MSN from the University of Pennsylvania. She has clinical experience in pediatric critical care, mechanical circulatory support and cardiac care. She has spent time as the program coordinator for the Cardiac Neurodevelopmental Outcomes program at Children’s National in Washington DC, and currently is the manager of the cardiac step-down unit and cardiac PACU at Nemours Alfred I. DuPont Hospital for Children.
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Immediate Past Chairs
 Bradley S. Marino MD MPP MSCE Lurie Children’s Hospital bradley.marino@northwestern.edu Program & Meetings Co-Chair |
Bradley Scott Marino is an attending cardiac intensivist at the Ann & Robert H. Lurie Children’s Hospital of Chicago. He is a Professor of Pediatrics and Medical Social Sciences at the Feinberg School of Medicine at Northwestern University, also serving as the Director of the Center for Cardiovascular Innovation in the Stanley Manne Children’s Research Institute. Dr. Marino is the Heart Center Co-Director of Research and Academic Affairs and Director of Cardiovascular Bridge Programs at Lurie Children’s Hospital and Bluhm Cardiovascular Institute at Northwestern Memorial Hospital. Dr. Marino earned his medical degree from Harvard Medical School and a Masters in Public Policy from the John F. Kennedy School of Government at Harvard University. He also has a Master’s of Science degree in Clinical Epidemiology from the Perelman School of Medicine at the University of Pennsylvania Center for Clinical Epidemiology and Biostatistics. His work is focused on modifying the care paradigm from mortality prevention to morbidity prevention. His research interests focus on the impact of neurodevelopmental, psychosocial, and physical morbidities on quality of life, functional status, and behavioral and emotional ourcomes in the high-risk complex congenital heart disease population. |
 Jacqueline H. Sanz PhD ABPP-CN Children’s National Health System JSanz@childrensnational.org |
Jacqueline Sanz PhD is a board certified neuropsychologist at Children’s National Health System. She is an Assistant Professor in the departments of Psychiatry and Behavioral Sciences and Pediatrics at the George Washington University School of Medicine. Dr. Sanz also co-directs the Cardiac Neurodevelopmental Outcomes Program (or CANDO Program) at CNHS. Dr. Sanz’s research focuses on neurodevelopmental outcomes in congenital heart disease, especially the role of executive function in predicting quality of life. |
Members at Large
 Jennifer L. Butcher PhD Michigan Medicine jennbutc@med.umich.edu |
Jennifer Butcher PhD is a pediatric psychologist at Michigan Medicine and an assistant professor in the Department of Pediatrics at the University of Michigan School of Medicine. Clinically, Dr. Butcher is the lead psychologist in the Birth to Age Four Cardiac Neurodevelopmental Follow-Up Program within the University of Michigan Congenital Heart Center. Dr. Butcher’s research interests include designing interventions to strengthen family relationships and to promote child resiliency and neurodevelopmental outcomes among children diagnosed with congenital heart disease. |
 Mary T. Donofrio MD Children’s National Health System mdonofri@childrensnational.org |
Mary Donofrio MD is a Professor of Pediatrics and Director of the Fetal Heart Program at Children’s National. Under her leadership, the program has flourished, growing from 200 to >3000 visits/year. In 2004 she designed an evidenced-based risk-assessment protocol for delivery room management which is now the standard of care for newborns with CHD. She has published >90 papers, including the AHA Scientific Statement on Fetal Cardiac Disease.
Dr. Donofrio is founder and Co-Director the Cardiac Neurodevelopmental Outcome Program, established in 2013 to evaluate children with CHD from birth through adolescence. She has been successful in procuring institutional and financial support the program, including hiring a program coordinator and education specialist and instituting a multidisciplinary outpatient clinic and inpatient developmental care rounds. Her primary research is in the study of fetal cerebral blood flow in CHD. Her early work was the first to describe that fetuses with CHD have alterations in cerebral vascular resistance. Currently she is a co-investigator on an RO1 grant using fetal echocardiography and MRI to assess cardiac hemodynamics and brain development. She also was a collaborator on an AHA grant, studying clinical factors predictive of neurodevelopmental outcome in CHD. |
Patient/Family Representative
 Amy Basken MS Pediatric Congenital Heart Association abasken@conqueringchd.org |
As the parent of a child with congenital heart disease my passion for the community is personal. I began as a parent advocate in 2005 shortly after the birth of my son. I am particularly interested in congenital heart disease across the lifespan, having worked with both pediatric and adult CHD populations since 2009. However, my experience with neurodevelopmental issues reaches back to 1996 when I graduated with my Masters in Speech Pathology. After graduating I spent the next 10 years working with various populations with neuro-cognitive issues, both developmental and acquired. I am thrilled to have the opportunity to participate in CNOC as it is the synthesis of multiple aspects of my knowledge areas! |
 Elizabeth Blumenfeld JD Mended Little Hearts-DC lizblumen@gmail.com |
A Heart Mom of a teenager, I saw how my son’s undiagnosed neurodevelopmental issues negatively impacted his self-worth. Once properly diagnosed and treated, my once fragile son gained confidence, socially and academically. Knowing he’ll reach his potential, I am now a passionate and committed advocate for others like him. A consumer protection lawyer and policy advocate with a Yale Law School JD, I obtained a Special Education Law and Advocacy certification to better understand children with learning differences. I’ve been Executive Director for two non-profits, including one providing cardiac care to children in Africa. I helped launch Children’s National’s CANDO clinic, serving as a parent advocate, fundraiser, and adviser. As a leader of Mended Little Hearts—DC, I’ve developed a cardiac-neurodevelopmental educational series, which is being filmed for use by Mended Little Hearts–National and Children’s National. During this year’s Congenital Heart Hill Day, I helped convince at least one Senator to co-sponsor the Congenital Heart Futures Re-authorization Act. Properly harnessed, parent leadership can provide CNOC with a visceral connection to other parents, educators, doctors, government bodies and other decision-makers in our children’s lives. Our stories and experiences will ensure stakeholders see our children as children, not just data points or statistics. |
Standing Committee Chairs
 Dawn Ilardi PhD ABPP Children’s Healthcare of Atlanta dawn.ilardi@choa.org Research Co-Chair |
Dawn Ilardi PhD is a board certified pediatric neuropsychologist at Children’s Healthcare of Atlanta. She is an Adjunct Assistant Professor in the Department of Rehabilitation Medicine at Emory University. Dr. Ilardi co-directs the Cardiac Neurodevelopmental Program at Sibley Heart Center and Children’s Healthcare of Atlanta where infants to young adults with congenital heart disease (CHD) are followed by multi-disciplinary providers. Dr. Ilardi has served as a co-investigator on a number of multi-site studies exploring neurodevelopmental outcomes in CHD, primarily during the school-age years. She has more recently become actively involved in the Quality of Life working group of the Congenital Heart Disease Public Health Consortium. |
 Nadine Kasparian PhD Cincinnati Children’s Hospital nadine.kasparian@cchmc.org Program & Meetings Co-Chair |
Nadine Kasparian is Professor of Pediatrics and Founding Director of the Cincinnati Children’s Center for Heart Disease and the Developing Mind, a partnership between the Heart Institute and Division of Behavioral Medicine & Clinical Psychology at Cincinnati Children’s Hospital. She is also Head of Cardiac Psychology at the Sydney Children’s Hospitals Network (SCHN). Nadine holds a National Heart Foundation of Australia Future Leader Fellowship (2017-2021) and was awarded a Harkness Fellowship in Health Care Policy and Practice based at Harvard Medical School (2018-2019). Her research investigates psychological and neurobiological aspects of chronic illness in children, particularly congenital heart disease (CHD), and she has established one of the largest psychobiological datasets in CHD. Nadine has a PhD in medical psychology from the University of Sydney and serves on the editorial board for Health Psychology Review and Psychology & Health. She is also a practicing clinician and in 2018 her team received the SCHN Innovation Award for Excellence in the Provision of Mental Health Services for Children with Heart Disease and their Families. |
 Sarah L. Kelly PsyD Children’s Hospital Colorado sarah.kelly@childrenscolorado.org Communications Chair |
Dr. Kelly is a pediatric psychologist at Children’s Hospital Colorado Heart Institute and Assistant Professor of Pediatrics and Psychiatry at University of Colorado School of Medicine. She is the Clinical Director of the Heart Institute Wellness Program, a team-based psychosocial care team, and is passionate about patient and family psychosocial support for children with congenital heart disease. In particular, Dr. Kelly follows children with single ventricle hearts and their families from diagnosis through childhood and adolescence into young adulthood through the Complex Congenital Heart Disease and Development Clinic and the multidisciplinary Fontan Clinic. She directs a cardiology rotation for psychology trainees in pediatric health and conducts research on emotional and behavioral outcomes and quality of life for children with congenital heart disease. |
 Anjali Sadhwani PhD Boston Children’s Hospital anjali.sadhwani@childrens.harvard.edu Database Chair |
Dr. Anjali Sadhwani is a clinical child psychologist at Boston Children’s Hospital and Instructor in Psychology at Harvard Medical School. She has been working with the pediatric cardiac population for the last eight years. Dr. Sadhwani specializes in conducting neurodevelopmental assessments for infants and toddlers with congenital heart disease. In terms of her research interests she is involved in the design and implementation of several research studies examining neurodevelopmental outcomes in this population. Dr. Sadhwani has been instrumental in setting up and overseeing the management of a comprehensive cardiac neurodevelopmental database at Boston Children’s Hospital. |
 Renee Sananes PhD CPsych Hospital for Sick Children renee.sananes@sickkids.ca Education and Training Chair |
Dr. Sananes is a psychologist in the division of Cardiology at the Hospital for Sick Children in Toronto. Her clinical and research work focuses on assessment of neurodevelopmental outcomes in infants and children with congenital heart disease and on identifying factors to promote quality of life in this population. |
 Mike Seed MD Hospital for Sick Children mike.seed@sickkids.ca Research Co-Chair |
Mike Seed is the Chief of Cardiology at Toronto’s Hospital for Sick Children. He is an assistant professor of Pediatrics, Medical Imaging and Obstetrics and Gynecology at the University of Toronto. He is an Associate Scientist at the SickKids Research Institute and an Associate Member of the Institute of Medical Science at the University of Toronto. Dr. Seed’s interest in cardiac neurodevelopment started with his attempts to investigate the relationship between oxygen transport across the fetal circulation and brain development in fetuses with congenital heart disease using MRI. He is currently undertaking a study to investigate the neuroprotective efficacy of maternal hyperoxygenation in fetuses with single ventricle hearts. |
 Karen Uzark PNP PhD Michigan Medicine karenu@med.umich.edu Publications Chair |
Karen Uzark is a pediatric nurse practitioner and assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program at the University of Michigan. Dr. Uzark has been involved in the clinical care of children with heart disease for more than 30 years and currently sees infants in the Congenital Heart Center Neurodevelopmental Follow-up Clinic. Dr. Uzark is nationally and internationally recognized as an expert in quality of life in congenital heart disease. Her research is focused on improving developmental outcomes in infants with heart disease and transition to adulthood in adolescents and young adults with CHD. |
 George R. Verghese MD MBA Lurie Children’s Hospital gverghese@luriechildrens.org Quality Improvement Chair |
George R. Verghese is an attending pediatric cardiologist with a focus in noninvasive cardiac imaging at the Ann & Robert H. Lurie Children’s Hospital of Chicago and an Assistant Professor of Pediatrics at Northwestern University’s Feinberg School of Medicine. His passion outside of clinical cardiology is in improving pediatric healthcare delivery though quality improvement. He is deeply committed to optimizing long-term neurodevelopmental outcomes in the context of improving healthcare value for pediatric cardiac patients. In addition to a Master’s in Business Administration focused in health care, Dr. Verghese has received additional formal quality improvement training from leaders in the field at Intermountain Healthcare and Cincinnati Children’s. He is currently the Director of Quality and Value Improvement for the Heart Center at Lurie Children’s and an Associate Medical Director of Lurie Children’s institutional quality improvement program, the Center for Excellence. He completed his Pediatrics, Pediatric Cardiology, and Noninvasive Cardiac Imaging training at Boston Children’s Hospital. |
Committee Leadership
 Laurel Bear MD Children’s Hospital of Wisconsin lbear@mcw.edu Education & Training Vice Chair |
Dr. Bear received her medical degree and pediatric training from the Medical College of Wisconsin and it’s affiliated hospitals. She is an Associate Professor in the Department of Pediatrics at the Medical College as well. Dr. Bear was instrumental in the development and expansion of the Herma Heart Institute Developmental Follow-up Program which is the first of its kind in the country. She provides oversight of personnel, staffs the clinics and, is active in the research activities associated with the developmental follow up of children with complex congenital heart disease. She is also actively involved in development of developmentally appropriate inpatient care for this patient population. |
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Susan Bowen PhD |
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 Samantha Butler PhD Boston Children’s Hospital samantha.butler@childrens.harvard.edu Quality Improvement Co-Vice Chair |
Samantha Butler PhD is a developmental and clinical psychologist at Boston Children’s Hospital and Assistant Professor in the Department of Psychiatry at Harvard Medical School. She is the lead clinician in the Cardiac Neurodevelopmental Inpatient Consultation Program where she provides clinical care for infants and children with CHD, along with their families, while investigating approaches for enhancing long term outcomes. Dr. Butler is also involved in research looking at developmental interventions for the fragile infant and family. She is co-chair of the NIDCAP Federation International Family Advisory Counsel. |
 Jennifer Cass PhD ABPP Nationwide Children’s Hospital Jennifer.Cass@Nationwidechildrens.org Quality Improvement Co-Vice Chair |
Jennifer Cass PhD is a board certified neuropsychologist, Clinical Director for Neuropsychology, and Associate Internship Training Director at Nationwide Children’s Hospital. She is a Clinical Associate Professor of Pediatrics at The Ohio State University. Dr. Cass leads neuropsychology clinical program development and quality improvement initiatives within the Section of Pediatric Psychology and Neuropsychology at Nationwide Children’s Hospital. She provides clinical care to children with a wide range of medical and neurological disorders, including children with congenital heart disease, 22q11.2 deletion syndrome, epilepsy, and hearing impairment. Dr. Cass has an interest in using quality improvement methods and initiatives to promote neurodevelopmental and long-term outcomes of children with congenital heart disease and other medical disorders. She has received formal quality improvement training from experts in the field at Nationwide Children’s Hospital. Dr. Cass also serves as co-coordinator of the scientific program for the American Academy of Clinical Neuropsychology (AACN) annual meeting. |
 Kathleen A. Mussatto PhD RN Milwaukee School of Engineering School of Nursing mussatto@msoe.edu Publications Vice Chair |
Dr. Mussatto is a scientist and Co-Director of Cardiac Research in the Herma Heart Center at Children’s Hospital of Wisconsin (CHW) and Associate Professor of Surgery at the Medical College of Wisconsin (MCW). Dr. Mussatto is Co-Director and research PI for the Cardiac Neurodevelopmental Follow-Up Program at CHW. This program, established in 2007, was the first of its kind in the nation. This work has documented longitudinal development in children with congenital heart disease (CHD) and factors which put children at higher risk for developmental delays. Dr. Mussatto is recognized as an international leader in this area and has been asked to educate others about the evaluation and management of neurodevelopmental outcomes in children with CHD.
Dr. Mussatto’s career path over the past 28 years includes transitions from bedside nurse to research coordinator to principal investigator. She has been engaged in clinical research with children and families with CHD for more than 15 years. Dr. Mussatto has extensive experience in the design, conduct, coordination, interpretation and dissemination of research findings in this population, and a strong record of extramural funding. Her program of research is focused on understanding and optimizing the psychosocial and functional outcomes of pediatric heart disease for affected individuals and their families. |
 Cynthia M. Ortinau PhD St. Louis Children’s Hospital ortinau_c@wustl.edu Research Vice Chair |
Cynthia Ortinau is a neonatologist and Assistant Professor of Pediatrics at Washington University in St. Louis. Her clinical and research interests intersect fetal and neonatal cardiac disease and neonatal neurology. She is one of several multidisciplinary providers who care for patients in the Cardiac Neurodevelopmental Clinic at St. Louis Children’s Hospital. She is also the Director of the Cardiac Neurosciences Group at Washington University, a research team studying brain development, brain injury, and neurodevelopmental outcomes of children with congenital heart disease. She is involved in several research studies using brain magnetic resonance imaging prenatally, during infancy, and throughout childhood. She has a particular interest in studying fetal brain development, including mechanisms that may affect the typical trajectory of fetal brain development for congenital heart disease patients. |
 Andrew Van Bergen MD Advocate Children’s Hospital andrew.vanbergen@advocatehealth.com Database Vice Chair |
Dr. Van Bergen is a pediatric cardiologist at Advocate Children’s Hospital in Oak Lawn, Illinois. He is the Director of the Pediatric Cardiac Critical Care program and the Director of the Cardiac Neurodevelopmental Program for Advocate Children’s Heart Institute. Dr. Van Bergen’s clinical interests include interdisciplinary care for patients with complex congenital heart disease, care throughout the spectrum of life for patients with HLHS, novel ventilation strategies, neurodevelopmental follow up care, and acute and chronic care of pulmonary hypertension. His clinical interests are focused on outcomes research within the CVICU and CND fields, novel pharmacologic studies, novel ventilation strategies, hospital safety, and quality improvement endeavors for the care of HLHS patients. He has been an active Principal Investigator on numerous industry-sponsored RCTs over the last decade. He is currently the Physician Champion for the NPCQIC Interstage Learning Lab. In addition to his busy clinical and administrative practice, he is the AdvocateAurora System Pharmacy and Therapeutics Committee Co-Chair, championing the special needs of the pediatric population in Illinois and Wisconsin. |
 David Wypij PhD Boston Children’s Hospital david.wypij@cardio.chboston.org Lead, Data Analysis Core |
David Wypij is Senior Biostatistician in the Department of Cardiology at Boston Children’s Hospital, Associate Professor of Pediatrics at Harvard Medical School, and Senior Lecturer at Harvard T.H. Chan School of Public Health. He has considerable experience in the leadership of biostatistical and data coordinating centers for both single- and multi-center clinical trials and longitudinal cohort studies, with special expertise in the areas of neurodevelopment and adolescent health, pediatric cardiology, and pediatric ICU management. He has served as principal investigator of several data coordinating centers, as co-investigator and senior biostatistician of numerous NIH-funded studies related to cardiac surgery clinical trials and neurodevelopmental follow-up, and as a mentor for junior researchers at Boston Children’s Hospital and graduate students at Harvard. He is an award-winning teacher and has taught courses in many areas of biostatistics and clinical trials at Harvard as well as short courses in Brazil, Gabon, Great Britain, Greece, Italy, and Portugal. |