Privacy Policy

Cardiac Neurodevelopmental Outcome Collaborative


We have made revisions to our Privacy Policy and Terms of Use (the “Policy”). These revisions become effective on the date below. You consent to the revised Privacy Policy after such data if you visit our website (the “Site”) or use our services (the “Services”) after that date.

Last Updated: June 12, 2018

This Privacy Policy and Terms of Use (“Policy”) governs your use of Cardiac Neurodevelopmental Outcome Collaborative’s website, (the “Site”), along with all software owned, provided by us, or made available by us on or through the Site or any third party site, including all Cardiac Neurodevelopmental Outcome Collaborative’ mobile application software made available through applications stores (“Software”); all services provided in connection with the Site and Software (“Services”); and all web pages, data, text, images, photographs, graphics, audio, video, documents, tags, and other information and content made available on or through the Site and Software (“Content”). We have developed this Policy to advise you as to what information we collect through the Site and the Software, whether personally identifiable or not, how we collect it, how we use it, how we share it, and how we protect it.

By accessing or using the Site and Software, you hereby agree to comply with and be bound by this Policy and the terms and conditions discussed herein. IF YOU DO NOT AGREE TO THIS POLICY, PLEASE DO NOT USE THE SITE, SOFTWARE, SERVICES, OR CONTENT.

The Information We Collect:

Information you voluntarily provide us: When you visit our Site or use the Software or Services and create an account and/or access your account through the Site and/or the Software you may voluntarily provide us with certain information that identifies you including without limitation your name, address and email address and any other information you may choose to share. In some cases, if you decline to share such information with us, we may not be able to respond to you or provide you with services. Other than as provided in this Policy, we will not use, disclose or share your information with any third parties, without your consent.

Information which we collect automatically: When you visit our Site or use our Software and Services, we may collect additional information, such as your internet protocol (or “IP”) address, browser, operating system, pages or content you access while visiting the Site and the date and time of such access.

Cookies and Tracking Technologies: We may collect information through the Site by way of cookies or other tracking technologies. Cookies and other tracking technologies are script files that facilitate the collection of information, such as the number of visitors to the Site, and how each visitor arrived at the Site. You may be able to reject or block cookies or tracking technologies on the Site by adjusting your browser settings. Most browsers offer instructions on how to reset the browser to reject cookies in the “Help” section of the toolbar. If you elect to reject cookies and other tracking technologies we may not be able to deliver certain information or services to you.

Payment Information: We collect certain payment and billing information when you register for certain paid Services. For example, you may be required to provide name and contact information for meeting registration and/or for membership application and dues renewal, as well as payment card details.

Device Information: We collect information about your computer, phone, tablet or other devices when you access our Site or use our Services, including connection type, operating system, browser type, IP address, device identifiers. You can disable the collection of much of this information through the settings of your device or through your operating system.

How We Use the Information We Collect:

We only use your information as permitted by law. We may combine information that we collect with information from external sources. We may use your information to:

  • Promote use of our Services to you and others or to send you marketing materials.
  • Bill and collect payment.
  • Provide you the Services.
  • Obtain your feedback on our Site. Software and Services.
  • Statistically analyze user behavior and activity and to improve the Site or Services.
  • Communicate with you and provide customer support.
  • With your consent for a specific use.

Google Analytics: Google Analytics is a web analysis service provided by Google that utilizes cookies to monitor web-traffic on the Site. We use Google Analytics to collect, track and examine data about the Site’s usage. We may run reports based on the data we collect and we may share the data with other Google services. Google may use the data to personalize and customize the advertisements that are served to you from its advertising network. The Site does not respond to Do Not Track Signals from your browser.

Who We Share Your Information With:
We may share or transfer information you provide to us or that we collect on the Site or through the Service.

Business-related transfers. We may share your information to other businesses that we acquire, are acquired by, or with which we merge or partner.

Service Providers. We may share your Personal information with our affiliates, service providers, partners, and other third parties (“Service Partners”) to provide the Services described herein to you, including membership services and the processing of dues and other payments.

We may also share our membership and conference attendee lists, which lists may include your name and/or email address, with or companies that may have products or services of interest to you, or to other members or attendees of conferences for which you are registered.

Compliance with Laws. We may disclose Personal Information about you at any time: if required to do so by law; if in good-faith we believe that such action is necessary to comply with local, state, or federal laws, or to respond to a court order, judicial or other governmental subpoena or warrant; or in the event of bankruptcy proceedings.

Protect Our Rights. We also reserve the right to share information if, in good faith, we believe such is appropriate or necessary to take precautions against liability; to protect us or our affiliates from fraudulent, abusive, or unlawful uses; to investigate and defend ourselves against any third-party claims or allegations; to assist government enforcement agencies; to protect the security or integrity of the Site and/or Software; or to protect our rights, property, or safety, and those of our affiliates and others.

Except as explicitly stated herein or otherwise agreed by you in a separate agreement, we will not share your Personal Information with any third parties.

Retention of Your Information

We may retain your questions and feedback in order to improve the Site. Do not send us any information, ideas, suggestions, proposals or comments that you consider confidential or that you wish to be treated as confidential. If you no longer want us to use or retain personal information you provided to us, you may contact us at [email protected] and request that we delete such personal information from our records.

Third Party Privacy Practices.

The Site may contain links to websites owned by third parties and third party advertisements. This Policy applies only to the Site and its content, Software, and our collection and use of information provided through the Site and/or Software. Your use of third party sites and content may be governed by such third party’s terms of use or privacy policies. Please review any third-party privacy policies before providing your information on any third-party site. We are not liable for or responsible for your use of third party sites or Third-Party Content.

Access and Integrity of Stored Personal Information

You can help us maintain the accuracy of your Personal Information by updating your account any time your Personal Information changes. If you wish to delete any Personal Information that you have provided, subject to your understanding that certain deletions may affect our ability to provide certain Services to you, you may do so by accessing your account through the Site or Software.

How We Store and Secure Your Information

We use data hosting service providers in the United States to host the information we collect, and we use technical measures to secure your data.

We will undertake reasonable steps to protect all information, from unauthorized or accidental access, disclosure, misuse or processing, or from alteration, destruction, or loss. However, because no security measures are perfect or impenetrable, we cannot guarantee the security of information you submit to us. Please use reasonable precautions, including safeguarding your username and password, in order to prevent unauthorized access of your account. If you believe that someone has obtained your username or password, or otherwise accessed your account without authorization, please notify us immediately at [email protected].

How Long We Keep Your Information

We retain your personal information in accordance with our data retention policies and practices. The length of time we keep your information depends upon a number of factors, including the type of information. In general, we retain personal information for as long as we have an ongoing business need to retain it. Following that period, we will delete it.

Users from the European Economic Area

Legal Basis for Processing. If you are an individual in the European Economic Area (EEA), we collect and process information about you only where we have legal bases for doing so under applicable European Union laws. The legal bases depend on how you use the Site, Software and the Services:

  • We need to collect and use the information to use Services;
  • It satisfies a legitimate interest (which is not overridden by your data protection interests), such as for research and development, to market and promote the Services and to protect our legal rights and interests;
  • You give us consent to do so for a specific purpose; or
  • We need to process your data to comply with a legal obligation.

If you have consented to our use of information about you for a specific purpose, you have the right to change your mind at any time, but this will not affect any processing that has already taken place. Where we are using your information because we or a third party (e.g. your employer) have a legitimate interest to do so, you have the right to object to that use though, in some cases, this may mean no longer using the Services.

How to Access or Control Your Information – The General Data Protection Directive grants individuals in the EEA certain rights with respect to their information. These include the right to request a copy of your information, to object to our use of your information (including for marketing purposes), to request the deletion or restriction of your information, or to request your information in a structured, electronic format. You can exercise these rights by contacting us at the address in the Contact Section below.

The GDPR provides that we may limit or deny your requests in certain cases. For example, if fulfilling your request would reveal information about another person, or if you ask to delete information which we have compelling legitimate interests to keep, including as required by law. You may have the right to complain to a data protection authority in the country where you live, where you work or where you feel your rights were infringed if you have concerns about your rights.

Other International Users

The Site is hosted and the Services are performed in the U.S. and are intended for U.S. customers. If you are a consumer accessing the Site from Asia, or any other region with laws or regulations governing personal data collection, use and disclosure that differ from U.S. laws, your continued use of the Site, which is governed by U.S. law and these terms, indicates your consent to transfer of your information to the U.S.

Children’s Privacy

Because protecting the privacy of young children is especially important, we do not knowingly collect or maintain information from or about persons under 13 years of age. No part of our Site is structured to attract anyone under 13. If you are under 13, do not use or access the Site at any time or in any manner. If we learn that personal information of persons under 13 has been collected on the Site without verified parental consent, we will take appropriate steps to delete this information.


Section 1798.83 of the California Civil Code requires select businesses to disclose policies relating to the sharing of certain categories of customers’ personal information with third parties. These businesses are required to accept requests for disclosures of these policies from customers but are only required to honor one request per calendar year. Businesses have thirty (30) days to respond to each inquiry to the designated address. Each inquiring customer will receive an explanation of the categories of customer information shared and the names and addresses of any third-party businesses. In limited circumstances, customers’ failure to submit requests in the manner specified will not require a response from the business.

If you are a California resident, you may request such information from us by sending a letter to the address listed below. In your letter, please provide your name, address and email address, as well as a request that we provide such information to you, by using the following or similar language, “I request that Cardiac Neurodevelopmental Outcome Collaborative provide its third-party information sharing disclosures required by section 1798.83 of the California Civil Code.”

Cardiac Neurodevelopmental Outcome Collaborative
2209 Dickens Road
Richmond, VA 23230

Changes to our Privacy Policy

We may revise this Policy at any time. Any Policy revisions will be effective upon posting to the Site. You should review this Policy, each time you visit the Site or the Services, to inform yourself of any revisions. Your continued use of the Site, Software, Services, and Content will constitute your acceptance of the Policy as revised.


The Site and Software and any Services or Content provided in connection with the Site and Software are provided “as is,” without warranties or conditions of any kind, whether oral or written, express, implied, or otherwise. We make no representations or warranties as to whether the Site, Software, and any Services or Content provided therewith are accurate, complete, or current. We specifically disclaim all implied warranties and conditions, including without limitation warranties of merchantability, non-infringement, and fitness for a particular purpose, to the maximum extent permitted by applicable law. In particular, we make no representation or warranty that the Site, Software, and any Services or Content provided therewith, or your use of any of the foregoing, will not infringe any patent or other proprietary right of any other person.

Your use of the Site, Software, and any Services or Content provided therewith, is entirely at your own risk. You understand and agree that in no event shall we, or our trustees, officers, employees, agents, or representatives, including Service Providers and other affiliated parties, be liable to you or any other use of the Site, Software, and any Services or Content provided therewith for any direct, indirect, incidental, consequential, special, exemplary, punitive, or any other monetary or other damages, fees, fines, penalties, loss of revenue, or business liabilities arising out of or relating in any way to the Site, Software, and any Services or Content provided therewith, including without limitation your use or inability to use any of the foregoing, whether or not any parties have been advised of the possibility of such damages.

You acknowledge and agree that your sole and exclusive remedy for dissatisfaction with the Site, Software, and any Services or Content provided therewith is to discontinue all use of the same.

You further acknowledge that the Site, Software, and any Services or Content provided therewith are not intended to constitute the practice of medicine or the furnishing of medical, nursing, or professional health care advice, diagnosis, consultation, treatment, or services in any jurisdiction.

Intellectual Property

We, and our licensors, own all right, title and interest in and to the Site and Software, and all proprietary Content provided in connection therewith, including all intellectual property rights therein. All rights not expressly granted to you herein are expressly reserved to us.

Modification or use of the Site, Software, or any proprietary Content for any purpose other than as expressly permitted herein, on the Site, or through the Software, is strictly prohibited. No right, title, or interest in any intellectual property underlying the Site, Software, and proprietary Content is transferred to you as a result of accessing or using it. Unless otherwise specified, you may not copy, modify, distribute, transmit, display, reproduce, publish, license, create derivative works from, link to or frame in another website, use on any other website, transfer or sell any proprietary Content obtained from the Site or through the Software, without our express written permission. The foregoing prohibition expressly includes, but is not limited to, the practices of “screen scraping” and “data mining.” In addition, you may not directly or indirectly decompile, disassemble, decipher, reverse engineer, reengineer or otherwise attempt to derive source code or the underlying ideas, algorithms, structure or organization from the Software.

All trademarks, service marks, and logos (“Trademarks”) displayed on the Site and/or through the Software, with or without attribution, are our, or third parties’, registered and/or unregistered trademarks. Nothing in or on the Site or Software should be construed as granting, by implication, estoppel, or otherwise, any license or right in or to the Trademarks without our and/or the applicable third parties’ express written permission.

Contact Information

If you have any questions regarding this Policy or how we treat information pursuant to this Policy we encourage you to contact us at [email protected] or by mail at:

Cardiac Neurodevelopmental Outcome Collaborative
2209 Dickens Road
Richmond, VA 23230

Attn: Privacy

Anne Gallagher PhD

Anne Gallagher is Professor at University of Montreal where she holds a Canada Research Chair in Child Neuropsychology and Brain Imaging. She is also a pediatric neuropsychologist and scientist at Sainte-Justine University Hospital, where she leads the Neurodevelopmental Optical Imaging Laboratory. She founded the interdisciplinary research program at the neurodevelopmental cardiac clinic at Ste-Justine University Hospital and contributed to the development of clinical assessment protocols. Her research program aims at identifying early biomarkers of neurodevelopmental impairments and developing intervention strategies to improve the neurodevelopmental outcomes of children with CHD. In 2017, she received the Young Researcher Award from the Heart and Stroke Foundation of Canada for her innovative research work in CHD. In 2022, she was the local co-chair of CNOC’s Scientific Sessions in Montreal.

Marie Brossard-Racine PhD

Dr. Marie Brossard-Racine is an Associate Professor in the Faculty of Medicine at McGill University and Canada Research Chair in Brain and Child Development. Using her multidisciplinary background in pediatric Occupational Therapy and Neuroimaging, she conducts research studies at the Montreal Children’s Hospital with children with brain-based disorders and their families. During the past 10 years, her research focused on better understanding the underlying mechanisms of neurodevelopmental disorders and delineating critical periods of brain plasticity in neonates, children, adolescents, and young adults with CHD. 

Jeffrey P. Jacobs MD

Jeffrey P. Jacobs, M.D is a Professor of Surgery and Pediatrics in the Congenital Heart Center at University of Florida and UF Health Shands Children’s Hospital.  Previously, he served as a cardiac surgeon at Johns Hopkins All Children’s Hospital from 1998–2019.  He was a Professor of Surgery and Pediatrics at Johns Hopkins University. He performs both pediatric and adult congenital cardiothoracic surgery and has performed over 4200 operations.  From 2007–2018, he was the Director of the Johns Hopkins All Children’s Hospital Heart Transplantation Program, which has performed over 180 pediatric heart transplants and specialized in high-risk pediatric cardiac transplantation.  He was Director of the Andrews/Daicoff Cardiovascular Program at Johns Hopkins All Children’s Hospital from 2013–2018 and Chief of Cardiovascular Surgery from 2015–2018.

Dr. Jacobs has been a member of the Society of Thoracic Surgeons Workforce on National Databases since 2006 (2006–2021 and 2023–today) and served as its Chair from 2015 – 2019 and Vice-Chair (2023–today).  He also served as Chair of the Society of Thoracic Surgeons Congenital Heart Surgery Database Task Force from 2006 – 2014.

Dr. Jacobs is Editor–in–Chief of Cardiology in the Young, one of the most widely read journals dedicated to pediatric and congenital cardiac care.

Dr. Jacobs is Co-Chair of the 2023 World Congress of Pediatric Cardiology and Cardiac Surgery.

He is 2019 Past-President of the Southern Thoracic Surgical Association. 

He served as Founding Chair of the Congenital Heart Surgeons’ Society (CHSS) Committee on Quality Improvement and Outcomes from 2011–2019.

From 2007–2014, Dr. Jacobs served as Founding Secretary of The World Society for Pediatric and Congenital Heart Surgery (WSPCHS).

He is the Working Group Leader of the Heart/Heart Surgery Working Group for U.S. News America’s Best Children’s Hospitals rankings (2015–2019 and 2021–today).

Dr. Jacobs received his medical degree from University of Miami School of Medicine.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Richard James MSLIS

Richard James is the parent of a young adult with HLHS and is a research librarian at Nemours Children’s Health. He has been active in CHD advocacy and a contributor to CHD research for more than a decade through service in a number of organizations including Conquering CHD, Mended Little Hearts, and NPC-QIC. Since 2022, he has been the patient/family representative on the executive leadership team of the Fontan Outcomes Network.

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.

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. 

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 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.

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.

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.

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.

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.

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.

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.


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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.