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CNOC

Cardiac Neurodevelopmental Outcome Collaborative

SIG: Cardiac Newborn Neuroprotective Network (CNNN)

SIG: Cardiac Newborn Neuroprotective Network (CNNN)

Est. 2017, CNOC SIG since 2020

 

ABOUT CNNN

Welcome to the Cardiac Newborn Neuroprotective Network (CNNN), a multidisciplinary professional group collaborating to improve the care of infants with complex congenital heart defects (cCHD).

 

 

Objectives

  • Promote individualized developmental care for infants with cCHD
  • Delineate standard care practices for infants with cCHD
  • Disseminate information, materials, and education
  • Collaborate on manuscripts and quality improvement projects
  • Share evidenced based ideas
  • Align with families of infants with cCHD

CNNN on Social Media

Twitter: @NewbornCardiac
Instagram: cardiac.newborn.neuro.network

CNNN Manuscripts

Lisanti AJ, Vittner D, Medoff-Cooper B, Fogel J, Wernovsky G, Butler S. Individualized Family-Centered Developmental Care: An Essential Model to Address the Unique Needs of Infants With Congenital Heart Disease. J Cardiovasc Nurs. 2019 Jan/Feb;34(1):85-93.

Jones CE, Desai H, Fogel JL, Negrin KA, Torzone A, Willette S, Fridgen JL, Doody LR, Morris K, Engstler K, Slater NL, Medoff-Cooper B, Smith J, Harris BD, Butler SC. Disruptions in the development of feeding for infants with congenital heart disease. Cardiol Young. 2021 Apr;31(4):589-596.

Desai H, Jones CE, Fogel JL, Negrin KA, Slater NL, Morris K, Doody LR, Engstler K, Torzone A, Smith J, Butler SC. Assessment and management of feeding difficulties for infants with complex CHD. Cardiol Young. 2022 Dec 23:1-10.

Lisanti AJ, Vittner DJ, Peterson J, Van Bergen AH, Miller TA, Gordon EE, Negrin KA, Desai H, Willette S, Jones MB, Caprarola SD, Jones AJ, Helman SM, Smith J, Anton CM, Bear LM, Malik L, Russell SK, Mieczkowski DJ, Hamilton BO, McCoy M, Feldman Y, Steltzer M, Savoca ML, Spatz DL, Butler SC. Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative. Cardiol Young. 2023 Mar 30:1-18.

Frequently Asked Questions

Q: How do I join?
A: If your institution is a member of CNOC, you should connect with Donna Pendarvis ([email protected]) and Lauren Malik ([email protected]) to request SIG membership.

Q: Does my institution have to be a member of CNOC to maintain membership with the CNNN?
A: If your institution is not a CNOC Institutional Member, you can still be part of our SIG by filling out the Nonmembers SIG/Committee Only application and paying a nominal fee. Additionally, please reach out to Donna and Lauren (emails above) to notify them of your request for SIG membership.

Q: What are the benefits of being a member?
A: As a benefit, you will have access to our listserv. It is a judgement-free zone for collaboration and has stayed true to its grassroots philosophy that we can learn and grow together.  We also collaborate on Quality Improvement projects, manuscripts, and educational initiatives, which you are welcome to join.

Q: What disciplines does CNNN represent?
A: CNNN members represent many disciplines (physicians, advance practice practitioners, nurses, speech/language pathologists, physical therapists, occupational therapists, psychologists, dietitians and family members of individuals with CHD).

Leadership


Samantha Butler PhD
Founder and Co-Chair
[email protected]
Courtney Jones MS CCC-SLP
Co-Chair
[email protected]

 

 

 

 

Hema Desai MS CCC-SLP BCS-S
Co-Vice Chair
[email protected]

 

 

 

 

Karli Negrin MS CCC-SLP
Co-Vice Chair
[email protected]

 

 

 

 

Lauren Malik PT MSPT
Co-Secretary (membership outreach)
[email protected]

 

 

 

 

Heather Watson BSN RN CPN
Co-Secretary (social media)
[email protected]

 

 

 

 


Eliza Harley PhD
Member at Large/Newsletter
[email protected]

 

 

 

 

Jodi Smith Esq.
Parent Lead
[email protected]

Jennifer Fogel MS CCC SLP/L
Founder and Immediate Past Chair
[email protected]

 

David Wypij PhD

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.

Laurence Beaulieu-Genest MD FRCPC

Dr. Beaulieu-Genest is a Developmental Pediatrician at CHU Sainte-Justine in Montréal (Québec, Canada), where she is the Medical Director of the Clinique d’investigation neurocardiaque (CINC), an interdisciplinary clinic dedicated to neurodevelopmental follow-up for children with congenital heart disease (CHD).

She is also involved in several specialized clinics of the Centre intégré du reseau en neurodéveloppement de l’enfant (CIRENE) of CHU Sainte-Justine and at the Intensive Functional Rehabilitation Unit and Long-Term Care Facility of Marie Enfant Rehabilitation Centre.

Dr. Beaulieu-Genest is a Clinical Assistant Professor and Co-Director of Université de Montréal’s Developmental Pediatrics Program.

She did her Pediatric Residency at CHU de Québec, Université Laval (2009–2012) before pursuing her training in Developmental Pediatrics at CHU Sainte-Justine, Université de Montréal (2012–2014). She then completed her fellowship at the Pediatric Complex Care Program and Cardiac Neurodevelopmental Program at Boston Children’s Hospital, Harvard Medical School (2015–2016).

Dr. Beaulieu-Genest is passionate about supporting children with CHD and their family in reaching their full potential and adapting to medical, psychosocial, and developmental challenges. She is also enthusiastic about sharing knowledge with physicians and professionals involved in the care of children with CHD. She has been actively involved in CNOC’s Learning & Resources Committee since 2017.

Kelly Wolfe PhD

Dr. Wolfe is a pediatric neuropsychologist and Associate Professor at the University of Colorado School of Medicine, the Clinical Director of Neuropsychology, 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 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, quality improvement projects, and clinical care in complex CHD.

Nadine Kasparian PhD MAPS

Dr. Nadine Kasparian is Professor of Pediatrics, Director of the Heart and Mind Wellbeing Center, and Director of the Center for Heart Disease and Mental Health Research at Cincinnati Children’s Hospital Medical Center. Nadine received her PhD in medical psychology from the University of Sydney, Australia and a Harkness Fellowship in Health Care Policy and Practice at Harvard Medical School. In 2008, Nadine established Australasia’s first psychology program dedicated to childhood heart disease at the Sydney Children’s Hospitals Network. At Cincinnati Children’s, her research focuses on improving neurodevelopment and mental health outcomes across the lifespan among people with congenital heart disease. Nadine serves as co-chair of the CNOC Program and Meetings Committee and research co-lead for the Fontan Outcomes Network (FON). She is associate editor of Psychology and Health, on the editorial board for Cardiology in the Young, and an author of American Heart Association Scientific Statements. Nadine also serves on the Steering Committee for the Australian National Standards of Care in Childhood-Onset Heart Disease and in 2021 was invited to join the Surgeon General of California’s Adverse Childhood Experiences (ACEs) Task Force to establish recommendations for trauma-informed prenatal care.

Cynthia M. Ortinau MD

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.

Sarah Kelly PsyD

Dr. Sarah Kelly is a pediatric psychologist at Children’s Hospital Colorado Heart Institute and Associate Professor of Pediatrics and Psychiatry at University of Colorado School of Medicine. She provides clinical consultation and intervention services across the continuum of care including outpatient cardiology clinic and inpatient cardiac progressive, intensive, and pre/post-surgical units. She is the Director of the Heart Institute Wellness Program, the psychosocial care team, and is passionate about patient and family psychological and developmental support for children born 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 multidisciplinary Complex Congenital Heart Disease and Development Clinic, the Cardiac Neurodevelopmental Follow-up Clinic, and the Fontan Clinic. She directs a cardiology rotation for psychology trainees in pediatric health and conducts qualitative and quantitative research on emotional and behavioral outcomes and quality of life for children with heart disease.

Anjali Sadhwani PhD

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.

Adam R. Cassidy PhD ABPP-CN

Dr. Adam R. Cassidy is a board certified pediatric neuropsychologist at the Mayo Clinic in Rochester, Minnesota where he has joint appointments in the Department of Psychiatry and Psychology and the Department of Pediatrics and Adolescent Medicine. He also maintains an ongoing affiliation with Boston Children’s Hospital, where he worked for the past decade before transitioning to Mayo. 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). He is 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 Child Neuropsychology and The Clinical Neuropsychologist.

Thomas A. Miller DO

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.

Samantha Butler PhD

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, Co-Chair of the NIDCAP Family Committee, and Vice Chair of the Cardiac Newborn Neurodevelopmental Network (SIG within CNOC).

Sonia Monteiro MD

Dr. Monteiro is a Developmental-Behavioral Pediatrician who is Medical Director of the Texas Children’s Hospital Cardiac Developmental Outcomes Program, a collaborative effort among the Divisions of Cardiology, Critical Care, Developmental Pediatrics, and Psychology. Under her leadership, the clinic has grown substantially since its launch in 2013 and now follows more than 1200 children with CHD. Her current research interests include exploring barriers to neurodevelopmental follow-up, improving access to interventions, and addressing parental mental health in the CHD population. Dr. Monteiro’s research has also focused on the identification of and receipt of services for children with autism spectrum disorder, including those with CHD. Dr. Monteiro currently serves as Co-chair of CNOC’s Diversity and Inclusion Special Interest Group, whose work to date has included a survey to assess provider perceived barriers to neurodevelopmental follow-up. Dr. Monteiro is a member of CNOC’s Community Outreach Committee and is involved in the building of a parent educational resource page for the CNOC website. Dr. Monteiro is actively engaged in pediatric resident and community pediatrician education in appropriate developmental-behavioral screening and management of children with CHD within the primary care medical home. Dr. Monteiro’s goal in serving as a Member-at-Large for CNOC is to add an important developmental pediatric perspective to CNOC leadership. Serving in this position would also allow her to partner with other members to improve the quality and consistency of care received by children with congenital heart disease across the country.

Frank Casey OBE MD FRCP MRCPCH BSc

Frank Casey is a Consultant Paediatric Cardiologist at The Royal Belfast Hospital for Sick Children, in Northern Ireland. He is a Clinical Professor of Paediatric Cardiology, at Ulster University and Queen’s University Belfast, and directs the congenital heart disease research programme across both universities.

Professor Casey is recognised as an international leader in researching neurodevelopment outcomes for children with CHD. In his term as Chair of The Psychosocial and Neurodevelopmental Working Group of The European Association for Paediatric and Congenital Cardiology, he promoted research and improved clinical care in this area. He has published widely and delivered many international lectures on neurodevelopment in CHD.

Professor Casey was the Northern Ireland Clinical Lead for The All-Ireland Congenital Heart Disease Network in the Years 2016 -2022 and was central to the development of this unique development in healthcare. In January 2023 he was awarded an OBE for his services to Healthcare in Northern Ireland.

Erin Beckemeier MEd

I have seen first-hand as a mother and a classroom teacher the impact CHD has on our heart warriors’ quality of life as it relates to their education. I have seventeen years of teaching experience, ranging from PK-8th grade, am certified in early childhood, early childhood special education, elementary education, and K-8 administration. I am a mother of five and have been a heart mom for almost 15 years. Because I was an educator, I already knew the process for getting my son the services he needed following his first surgery, seizure, and lengthy hospitalization. I want to be a part of this organization so that other parents who might not have a background in development or education will have access and information to give their child the monitoring and services they require. From my experience navigating as a parent, as well as what other parents routinely share on social media groups, there is a need for a uniform, consistent policy within the CHD setting. Currently, it seems to vary widely depending on what center or referring physician your child is seen by. My goal is to be an advocate for families affected by CHD, that they may be equipped with the information they need to help their child develop to their fullest potential.

Jessica Cowin MS

Jessica was born with a rare and severe congenital heart defect called hypoplastic left heart syndrome (HLHS) as well as two other defects, double-outlet right ventricle (DORV) and mitral atresia (MA).  She needed a series of three palliative surgeries, culminating in the Fontan. The first was at was four days old, the second at 18 months, and the third at five years of age. At the age of 13, the doctors revised the Fontan that included a pacemaker. Three years later, Jessica was told she was going to need a heart transplant; she was just about to turn 16. The CHD/HLHS life was all she knew. Jessica did not know that a transplant was ever a possibility. On Saturday, September 25, 1999 her mom answered the phone. The transplant coordinator from the hospital told her that they had a heart for Jessica, after only three weeks on the waiting list.

Nearly ten years later, Jessica went into kidney failure, due the immunosuppressive medications she had to take, to keep her heart from rejection. Her younger sister saved her life by donating one of her kidneys. It has been 21 years post heart transplant and 11 years since her kidney transplant, in 2009. Jessica is the Manager of Research & Advocacy at The Children’s Heart Foundation. She received her Bachelor’s degree from DePaul University in Business Management and Entrepreneurship and her Masters from DePaul in Health Communication.

Corinne Anton PhD ABPP

Corinne Anton, PhD, ABPP is a board-certified psychologist in Behavioral and Cognitive Psychology, Director of the Cardiac Neurodevelopmental Program at Children’s Health in Dallas, Texas, and an Assistant Professor of Psychiatry at the University of Texas Southwestern Medical Center. She received her PhD in clinical psychology from the University of Arkansas, in Fayetteville. Dr. Anton provides clinical care and neurodevelopmental assessment for children, adolescents, and young adults with congenital heart disease. Her role extends to assessing and supporting patients with heart failure and ventricular assist devices. Dr. Anton’s research interests include neurodevelopmental outcomes among congenital heart disease patients, with a focus on fetal risk factors, longitudinal impacts of electronic device use, and physical activity on neurocognitive outcomes. Dr. Anton serves as a supervisor for practicum students, interns, and postdoctoral fellows in pediatric health and adult clinical psychology.

Joanne Bonanno MA

Joanne Bonanno is a Psychometrist at the Hospital for Sick Children in Toronto.  There she assesses children in the Neonatal Neurodevelopmental Follow-up Clinic as part of a team of neurodevelopmental experts who provide personalized care throughout the follow-up course, to optimize outcomes for neonates who have been admitted to the Cardiac Critical Care Unit and may be at risk for developmental issues, through the integration of research, education and community collaborations. She is tremendously hopeful about the positive impact that the Cardiac Neurodevelopmental Outcome Collaborative is having on children and their families facing congenital heart disease and is grateful for the opportunity to be part of the team.

Jacqueline H. Sanz PhD ABPP-CN

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.

Gina Boucher MSN

Gina is a Clinical Data Analyst for the Heart Center at Phoenix Children’s Hospital.  She has over 26 years of nursing experience including Level IV NICU and pediatric surgery management.  Born and raised on the south shore of Massachusetts, Gina graduated from New England Baptist Hospital School of Nursing in Boston and later obtained her MSN with an emphasis in Healthcare Informatics from Grand Canyon University.  In addition to coordinating data for CNOC, she also manages clinical data entry at Phoenix Children’s for IMPACT, PC4, and the ACPC Quality Network.  She is passionate about using data to support the quality of patient care.  In her free time, Gina runs a custom sugar cookie business out of her home, enjoys doing Pilates, hiking, and photography.

Jennifer Butcher PhD

Jennifer Butcher PhD is a pediatric psychologist at Michigan Medicine and an associate 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.

Justin Elhoff MD MSCR FACC

Justin is the Medical Director of the Cardiac Intensive Care Unit with Pediatrix Medical Group at Sunrise Children’s Hospital in Las Vegas, NV and a Clinical Associate Professor of in the Department of Pediatrics at the Kirk Kerkorian School of Medicine at UNLV.  He has previously worked as a cardiac intensivist at Texas Children’s Hospital where he helped develop the inpatient developmental care efforts and has led and participated in several research efforts pertinent to neurodevelopment in congenital heart disease.  He additionally serves as a CNOC representative on the Editorial Board for Cardiology in the Young.  He is also active in the Pediatric Cardiac Critical Care Consortium (PC4) as a clinical champion and member of the Audit, Program, and Scientific Review Committees.  He is excited to work within the Research Committee to enhance the role of CNOC within Cardiac Networks United and promote continued research efforts to focus on longitudinal and holistic outcome measures for patients with congenital heart disease.

Jennifer Fogel MS CCC-SLP/L

Jennifer Fogel MS CCC-SLP/L is currently working as a speech language pathologist at Advocate Children’s Hospital in Oak Lawn, Illinois. She provides services in the Pediatric Cardiac Intensive Care Unit, High Risk Single Ventricle Clinic and Neurodevelopmental Follow-Up Clinic. During her more than 20 years in the field, she has specialized in pediatric feeding disorders. Her career focus has been working with infants born with complex congenital heart disease and their families in the pediatric intensive care unit before and after surgery. She has a special interest in feeding and swallowing challenges, neuroprotection interventions and neurodevelopmental support for this specialized population. Jennifer enjoys collaborating with families and medical teams to improve long-term outcomes for these infants. Jennifer has lectured across the nation and contributed to publications providing education to others on the importance of early intervention, family involvement and clinical pathways to improve oral feeding experiences for newborns with CHD. She has been involved in the Nutrition & Growth Committee Initiatives through NPCQIC and Co-Chair for CNOC’s Learning & Resources Committee. 

Kristi Glotzbach MD

Dr. Glotzbach is a cardiac intensivist and the co-director of the Heart Center Neurodevelopmental Program at the University of Utah and Primary Children’s Hospital.  Dr. Glotzbach has clinical, quality improvement (local, NPS-QIC and CNOC) and research interests in inpatient (post-operative neuromonitoring, developmental care and parental engagement) and outpatient modifiers of developmental outcomes in CHD.  Dr. Glotzbach is an institutional leader in multiple QI projects aimed at neurodevelopmental practices and care delivery.  Since joining CNOC in 2016, Dr. Glotzbach has served the CNOC mission as a member of the education and training committee and the QI committee.

Bea Latal MD MPH

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 group “Children’s Heart and Development”, Dr. Latal’s aims to characterize the prevalence and severity of neurodevelopmental impairments in patients with complex congenital heart disease across their lifespan, to identify risk factors for impairments and to study the mechanisms involved in the etiology of brain injury. With her research team, Dr. Latal develops new interventions such as parent-centered early motor intervention and multimodal executive function training during adolescence. The goal of these interventions is to improve the neurodevelopmental outcome and quality of life of these vulnerable patients and will ensure an optimal integration into adult life.

Karli Negrin MS CCC SLP

Karli Negrin is a Speech Language Pathologist and a dedicated member of the Cardiac Developmental Care Team at Nemours Children Health.  She has over 15 years of experience addressing feeding and swallowing disorders of infants with congenital heart disease.   She has a special interest in preserving the parent and infant dyad as it relates to feeding experiences as well as examining the impact of restrictive feeding on family quality of life.  Karli serves as Vice Chair of the Cardiac Newborn Neuroprotective Network and Vice Chair of the Communication Committee of the Cardiac Neurodevelopmental Outcomes Collaborative.

Chetna Pande MD MPH

Dr. Chetna Pande is pediatric cardiac intensivist at Baylor College of Medicine/Texas Children’s Hospital (TCH) in Houston, TX. She is trained in pediatric ICU and cardiac ICU. She leads the inpatient developmental care program at TCH, as well as serving as a liaison to the Texas Childrens Hospital Cardiac Developmental Outcomes Outpatient Program. Her passion is in ICU liberation, caregiver support in the hospital, and improving inpatient developmental care in an effort to improve long term neurodevelopmental outcomes in high-risk children with congenital heart disease. She also leads and collaborates in a number of clinical and research studies pertinent to neurodevelopment in patients with congenital heart disease. She is excited to serve as Co-Chair of the Communications Committee to expand the breadth, scope, and exposure of CNOC to both practitioners and families.

Sarah Plummer MD

Dr. Plummer is a pediatric cardiologist at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. Dr. Plummer is the Director of Quality for the Rainbow Heart Center, as well as Co-Director of the Single Ventricle Program and Director of the Cardiac Neurodevelopmental Outcomes Initiative.  Dr. Plummer’s research and clinical interests are thus in quality improvement – particularly with respect to neurodevelopmental outcomes in children with congenital heart disease, the care of the patient with single ventricle heart disease, echocardiography, and the diagnosis and management of fetal heart disease.   Given her interests in cardiac neurodevelopment and quality improvement, Dr. Plummer has been a member of the CNOC Quality Improvement Committee since 2021, assuming the role of Vice Chair in 2023.  In addition, she believes in the best outcomes for all patients and that all patients deserve to receive equitable care regardless of gender, race, ethnicity, socioeconomic status, or sexual orientation.  Given this focus, Dr. Plummer is also a member of CNOC’s Diversity and Inclusion Special Interest Group.

Caitlin Rollins MD SM

Dr. Rollins is Assistant Professor of Neurology at Harvard Medical School and the Director for Boston Children’s Hospital’s Cardiac Neurodevelopmental Program where she cares for children with congenital heart disease from infancy into adulthood. As an NIH-funded clinical researcher, her work lies at the intersection of neurology and cardiology, evaluating the relationships between brain MRI findings and neurodevelopmental outcome in children with congenital heart disease. Her most recent work has been focused on the association of brain MRI findings in the fetal period with outcome. Dr. Rollins’ clinical work as a neurologist caring for patients with congenital heart disease informs her research and supports her dedication to bring the benefits of research to children and their families.

Andrea Smith BSN

Andrea Smith is the Program Coordinator for the University of Utah/Primary Children’s Hospital Heart Center Neurodevelopmental Program (HCNP). Andrea received her BS in Nursing and Psychology from the University of Utah and worked for 11 years as a PICU RN before moving to the Program Coordinator role with HCNP. In her local leadership role in HCNP she has implemented and tracked programs to improve inpatient developmental care delivery, parent mental health, family bonding and resilience, health equity, and long-term neurodevelopmental outcomes for CHD patients and families. She has been integral in overall program growth and expansion. Nationally, Andrea is an active member of the CNOC Program Coordinator Network SIG and the Program and Meetings Committee, where she was involved in planning the 2021 Utah and 2022 Montreal CNOC Scientific Sessions.

Amanda J. Shillingford MD

Dr. Amanda Shillingford is a pediatric and fetal cardiologist at the Children’s Hospital of Philadelphia and Associate Professor of Clinical Pediatrics at the Perelman School of Medicine at the University of Pennsylvania.  She is the Cardiology Lead for the CHOP Cardiac Kids Developmental Follow-up Program, which has recently embarked on an expansion project to improve access to developmental care for all children with CHD.  She has a longstanding research interest in characterizing and improving the neurodevelopmental outcomes and psychosocial experience for children and their families living with CHD.  Dr. Shillingford has been a co-investigator on a number of multicenter and multidisciplinary grant funded research projects and continues to be active in outcomes research.  As a member of the CHOP Cardiac Center Family Advisory Council, the CHOP Family StEPS (starting early with psychosocial support) Program Council, and a medical advisory board member for the Bret Boyer Foundation, Dr. Shillingford is able to link her clinical experience to family centered programmatic improvements across the continuum of care.

Dr. Shillingford completed her pediatric and pediatric cardiology training at CHOP.  She worked at Children’s Hospital of Wisconsin and Nemours / A.I. duPont Hospital for Children prior to returning to CHOP in 2015.  Dr. Shillingford is excited to join the CNOC team and looks forward to the ongoing growth and collaboration of the CNOC community.

Erica Sood PhD

Dr. Erica Sood is a pediatric psychologist at Nemours Children’s Hospital, Delaware and an Associate Professor of Pediatrics at Sidney Kimmel Medical College of Thomas Jefferson University. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and trains psychology fellows in the specialty area of cardiac neurodevelopment. Her research focuses on partnering with stakeholders to develop and test family-based psychosocial interventions to promote family wellbeing and child neurodevelopmental outcomes. She serves on the Editorial Boards of Journal of Pediatric Psychology and Clinical Practice in Pediatric Psychology and on the Scientific Advisory Committee for Conquering CHD.

Caren S. Goldberg MD

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. She serves as one of the principal investigators at the University of Michigan for the work of the NHLBI-funded Pediatric Heart Network. She was part of the founding steering committee of CNOC and has served as a co-chair over the past two years. Her research interests are focused on methods of improving long-term outcomes, including neurodevelopmental and quality of life outcomes, for children with congenital heart disease. She is extremely enthusiastic about the growth of collaboration in our field and the progress of the Cardiac Neurodevelopmental Outcome Collaborative as this will enable us to more quickly answer questions, understand best practices for optimizing neurodevelopmental outcomes and advancing care for children with congenital heart disease.

Shabnam Peyvandi MD MAS

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.