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
 Adam R. Cassidy PhD ABPP-CN Boston Children’s Hospital adam.cassidy@childrens.harvard.edu |
Adam R. Cassidy is Attending Neuropsychologist at Boston Children’s Hospital and Assistant Professor of Psychology at Harvard Medical School. He is board certified in clinical neuropsychology with subspecialty certification in pediatric neuropsychology by the American Board of Professional Psychology (ABPP). Dr. Cassidy is a scientist-practitioner whose research focuses on characterizing and promoting positive neurobehavioral and psychosocial outcomes among children and adolescents with critical congenital heart disease (CHD). Dr. Cassidy is also very active in clinical neuropsychological assessment and consultation with children and families affected by CHD. In addition to his work in CHD, Dr. Cassidy is Principal Investigator (multi) on an NIMH-funded R01 grant examining neurodevelopmental outcomes among young children exposed in utero to HIV, he is a member of the Board of Directors of the American Academy of Clinical Neuropsychology (ABCN), and he serves as a Consulting Editor for the journal, Child Neuropsychology. |
 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. |
Co-Vice Chairs
 Shabnam Peyvandi MD MAS University of California-San Francisco shabnam.peyvandi@ucsf.edu |
Dr. Shab Peyvandi is an Associate Professor of Pediatrics, Epidemiology & Biostatistics at the University of California San Francisco with a clinical focus on fetal and pediatric cardiology. She is a funded physician researcher with a focus on neurodevelopmental outcomes in congenital heart disease. In particular, she focuses on the transection of cardiovascular physiology with brain health beginning in utero and across the lifespan. She co-directs the Healthy Hearts & Minds Program at UCSF which focuses on the long-term development and quality of life in children with CHD. She is enthusiastic about the growth of the Cardiac Neurodevelopmental Outcome Collaborative and looks forward to continuing the mission of optimizing developmental outcomes in children with CHD. |
 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. |
Secretary
 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. |
Treasurer
 Ginnie Abarbanell MD University of Texas San Antonio abarbanellg@gmail.com |
Ginnie Abarbanell is a professor of pediatric cardiology at the University of Texas San Antonio and division chief of pediatric cardiology. At the UT San Antonio, Dr. Abarbanell will be developing a cardiac neurodevelopmental program. Dr. Abarbanell has served with the Congenital Heart Public Health Consortium, the CNOC R13 Neurodevelopmental Outreach, Education and Advocacy Working Group and the CNOC Community Outreach committee. She has had the privilege to work on public health issues related to cardiac neurodevelopment at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control (CDC). Her particular interest is in improving access to care especially in the education system for children with CHD. Personally, as a parent of two children with a learning difference and ADHD, Dr. Abarbanell understands the challenges many children with CHD and their caregivers experience which has shaped her passion in cardiac neurodevelopment. |
Immediate Past 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). |
Members at Large
 Melissa Jones MSN APRN CPNP-AC Children’s National Health System mejones@childrensnational.org |
Melissa B. Jones MSN APRN CPNP-AC is a nurse practitioner and Director of the Neurocardiac Critical Care Program (NCCP) in the Cardiac Intensive Care Unit (CICU) at Children’s National Hospital in Washington DC. As the Director of the NCCP, Melissa leads an integrated, multidisciplinary team focused on eliminating secondary brain injury, optimizing brain development, and promoting healthy family bonding in the CICU. Melissa has led several quality improvement projects including the development and implementation of infant and toddler holding guidelines, a pain and sedation pathway, weekly multidisciplinary neurodevelopmental rounds, standardized neuromonitoring guidelines, and parental mental health screening. Melissa’s clinical interest is understanding and addressing CICU-specific modifiable risk factors to long- term neurodevelopmental problems. |
 Robin Schlosser PT DPT Texas Children’s Hospital rrschlos@texaschildrens.org |
Robin Schlosser has been a physical therapist within the Texas Children’s Heart Center for the past 15 years. In addition to obtaining a Doctorate of Science in Physical Therapy with a Pediatric Focus, she has transitioned from PT Generalist to PT Clinical Specialist and Advanced Clinical Specialist before advancing to PT Specialty Coordinator for Critical Care. In this role she has the opportunity to drive changes in the developmental care practices for inpatients throughout the Heart Center.
Her specific clinical and research interests include optimizing developmental care provision for patients in the CICU and developing programs for patients on ventricular assist devices. She has spoken at multiple national conferences on rehabilitation of patients on ventricular assist devices and have been instrumental in the creation of Developmental Care Rounds in the CICU. She is passionate about interdisciplinary collaboration and optimizing long-term outcomes for patients and families. Recently, she worked to create a series of interactive Developmental Care Workshops for staff of all educational backgrounds throughout the Heart Center. |
Patient/Family Representatives
 Elizabeth Blumenfeld JD Mended Hearts Inc. lizblumen@gmail.com Community Outreach Co-Chair |
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. |
 Nathalie H.P. Claessens MD PhD Wilhelmina Children’s Hospital n.h.p.claessens-2@umcutrecht.nl European Liaison |
Nathalie Henriette Petra Claessens MD PhD is a clinical fellow in Pediatrics and a research post-doc in Neonatal Neurology at the Wilhelmina Children’s Hospital (Utrecht University, the Netherlands). Her research interests are focused on methods of improving early brain development in children with congenital heart disease and she has set up a longitudinal brain imaging program for fetuses and neonates with congenital heart disease in the Netherlands. Her educational background includes completing medical school (2014), obtaining a master’s in teaching (2017), performing a research fellowship at The Hospital for Sick Children in Toronto (2017) and earning a PhD at Utrecht University (2018). For her research, she has been awarded, among others, the Young Investigator Award of the European Society for Pediatric Research (ESPR) and of the Society for Pediatric Research (SPR). Nathalie supervises several PhD students and she is a dedicated teacher for research fellows and medical students. She is passionate about improving clinical care for children with congenital heart disease. A member of the research committee of the European Association for the Brain in Cardiac Disease (European ABCD), she is enthusiastic about international collaborations for answering research questions more quickly and accurately. |
 Jessica Cowin MS The Children’s Heart Foundation jcowin@childrensheartfoundation.org Community Outreach Co-Chair |
Standing Committee Chairs
 Laurel Bear MD Children’s Hospital of Wisconsin lbear@mcw.edu Education & Training 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. |
 Samantha Butler PhD Boston Children’s Hospital samantha.butler@childrens.harvard.edu Quality Improvement Co-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-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. |
 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. |
 Bea Latal MD MPH University Children’s Hospital Zurich bea.latal@kispi.uzh.ch Publications Committee Co-Chair |
Dr. Latal is the Co-Director of the Child Development Center at the University Children’s Hospital Zurich. She leads a large research group and is dedicated to teaching and faculty development. In her research, she investigates the developmental outcome of newborns and children at risk for neurodevelopmental disorders. This includes children born very prematurely, children with hypoxic-ischemic encephalopathy (“perinatal asphyxia”) and children with severe congenital heart disease. Dr. Latal’s main research goals are to characterize the prevalence and severity of neurodevelopmental impairments in these children, to identify the potential risk factors for impairments and to study the mechanisms involved in the etiology of brain injury. Dr. Latal also examines the application of diagnostic tools such as amplitude integrated EEG, cerebral MRI and neurological examination for their potential usefulness as outcome predictors. Outcome research is becoming more important with the increasing survival rates achieved, thanks to major improvements in intensive care medicine and general care. A better understanding of the mechanisms involved in the etiology of brain injury in these high-risk children will allow for neuroprotective drug therapies and other interventions. Such interventions will improve the neurodevelopmental outcome and quality of life of these vulnerable patients and will ensure an optimal integration into adult life. |
 Brad Marino MD MPP MSCE MBA Lurie Children’s Hospital bradley.marino@northwestern.edu Program & Meetings Co-Chair |
Bradley S. Marino MD MPP MSCE, Co-Director of Research and Academic Affairs within the Heart Center at the Ann & Robert H. Lurie Children’s Hospital of Chicago. For the last 20 years, Dr. Bradley Marino’s research has focused on measuring and improving long-term outcomes in neonates, infants, children, and adolescents with complex congenital heart disease (CHD). Dr. Marino is an international expert on cardiac intensive care, resuscitation, and the impact of neurodevelopmental, psychosocial, and physical morbidities on quality of life (QOL), functional status, and behavioral/emotional outcomes in the high-risk complex CHD population. He has a special interest in long-term outcomes in single-ventricle survivors. Dr. Marino has led and participated in multiple NIH and other foundation-funded studies assessing modifiable predictors of long-term outcomes in the high-risk complex CHD population. Dr. Marino has advanced training in public policy and clinical epidemiology. As Co-Director of Research and Academic Affairs within the Heart Center at the Ann & Robert H. Lurie Children’s Hospital of Chicago, he has lead research and academic affairs, pursued work as a principal investigator in cardiovascular research and mentored fellows and faculty in the Heart Center. Dr. Marino’s ardent goal is to create academic and research infrastructure to assist fellows and faculty in the Heart Center to have successful academic careers and improve patient outcomes and family experience. His major contributions to science include QOL assessment and neurodevelopmental outcomes in pediatric and CHD survivors, single ventricle CHD outcomes, and resuscitation science. |
 Cynthia M. Ortinau MD St. Louis Children’s Hospital ortinau_c@wustl.edu Research 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. |
 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. |
 Andrew Van Bergen MD Advocate Children’s Hospital andrew.vanbergen@advocatehealth.com Database & Implementation 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. |
Standing Committee Vice Chairs
| Joanne Bonanno MA Hospital for Sick Kids joanne.bonanno@sickkids.ca Database & Implementation Vice-Chair |
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| Susan Bowen PhD Rainbow Babies and Children’s Hospital susanbowenphd@gmail.com Communications Vice Chair |
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 Jennifer Butcher PhD Michigan Medicine jennbutc@med.umich.edu Research Co-Vice Chair |
Samantha Butler is an academic pediatric psychologist, whose focus has been directed at improving the quality of hospital care and long-term outcomes for high-risk infants through clinical innovation and investigation. She promotes resilience and adaption in medically compromised youth through intervention for children, their families, and the health care environment. She is the Director of Infant Inpatient Neurodevelopment in the Cardiac Neurodevelopmental Program at Boston Children’s Hospital, Newborn Individualized Development Care and Assessment Program (NIDCAP) professional, Chair of the NIDCAP Family Committee, Co-Chair of the Quality Improvement Committee within the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), and Vice Chair of the Cardiac Newborn Neurodevelopmental Network (SIG within CNOC). |
 Jennifer Fogel MS CCC-SLP/L Advocate Children’s Hospital jennifer.fogel@advocatehealth.com Education & Training Vice-Chair |
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Kristi Glotzbach MD University of Utah – Primary Children’s Hospital Kristi.glotzbach@hsc.utah.edu Quality Improvement Vice Chair |
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 Caitlin Rollins Boston Children’s Hospital caitlin.rollins@childrens.harvard.edu Research Vice Chair |
Core Lab Leadership
 Jacqueline H. Sanz PhD ABPP Children’s National Medical Center jsanz@childrensnational.org Lead, Data Analysis Core (2018-2023) |
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. |
 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. |