Cardiac Neurodevelopmental Program | Research and Innovation

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Contact the Cardiac Neurodevelopmental Program

The Cardiac Neurodevelopmental Program is based on the ongoing research of executive director Jane W. Newburger, MD, MPH, and her colleagues.

Patient registry

The Cardiac Neurodevelopmental Program is assembling a registry of neurodevelopmental information for many of our patients. Participation in this registry is completely voluntary and confidential. Currently 90 percent of our patients choose to participate. The registry serves as a rich data source for current and future research into the effects of pediatric heart disease on neurodevelopment.

For more information, please call our program coordinators at 617-355-3401.

Research funded by the National Heart, Lung and Blood Institute (NHLBI)

With funding from the NHLBI, Cardiac Neurodevelopmental Program executive director Jane Newburger, MD, MPH, along with her Boston Children's colleagues Michael Rivkin, MD, David Bellinger, PhD, and David DeMaso, MD, is studying the relationship of development and behavior to brain structure using MRI brain scans in teenagers with congenital heart defects.

Additionally, through the NHLBI-funded Pediatric Heart Network, Boston Children’s faculty are studying the longer-term neurodevelopmental outcomes of young children with hypoplastic left heart syndrome (HLHS) and other forms of single ventricle defects.

Selected prior and current research

Pilot study of executive function intervention to improve neurodevelopmental outcomes in adolescents with congenital heart disease

Executive dysfunction can profoundly impact all dimensions of a child's development. Impairments in executive function are a central component of the neurodevelopmental phenotype associated with congenital heart defect, and manifest as behavioral dysregulation and problems with attention, working memory and organization/planning abilities. Identifying effective treatment strategies is vital for providing optimal care for these patients. The Cogmed executive function intervention, an evidence-based computerized neurocognitive program, improves outcomes in several pediatric populations. Johanna Calderon, PhD; Jane Newburger, MD, MPH; David Bellinger, PhD; and their study team are conducting a pilot study to evaluate its efficacy in reducing morbidities in patients with congenital heart defect. This is a single center, single blinded 2-arm randomized controlled trial to test the immediate post-treatment and 3-month follow-up efficacy of Cogmed intervention versus standard of care in adolescents with congenital heart defect.

Questions about the study? Contact Johanna Calderon, PhD. (johanna.calderon@childrens.harvard.edu)

Improving neurodevelopmental outcomes in children with congenital heart disease: An intervention study

Children with congenital heart defect are at high risk for cognitive impairments including deficits in attention and social development. To date, there is a crucial gap in research regarding the efficacy of preventive or treatment strategies for these important morbidities. This is a randomized controlled trial (RCT) to evaluate the efficacy of a cognitive intervention targeting working memory on the neurodevelopmental outcomes of children with critical congenital heart defect after infant open-heart surgery. Medical and surgical characteristics of children and their response to the intervention will also be evaluated. Study ClinicalTrials.gov Identifier: NCT03023644.

Questions about the study? Contact Johanna Calderon, PhD. (johanna.calderon@childrens.harvard.edu)

For further information on interventions in congenital heart disease:

Published article: Calderon J and Bellinger DC. Executive function deficits in congenital heart disease: Why is intervention important? Cardiol Young 2015; 17:1-9. https://www.ncbi.nlm.nih.gov/pubmed/26082199

Social cognition and autism spectrum traits in children and adolescents with congenital heart disease

Children and adolescents with congenital heart defect may display specific impairments in social cognition including theory of mind and emotion comprehension as well as a higher prevalence of autism spectrum traits. We are developing a series of single-center studies to investigate the 1) mechanisms, 2) age-related longitudinal changes, 3) cognitive predictors, and 4) brain correlates of deficits in these critical developmental areas.

To learn more about these studies, contact Johanna Calderon, PhD. (johanna.calderon@childrens.harvard.edu)

The impact of early-term birth on neurodevelopmental and psychiatric outcomes in adolescents with single ventricle congenital heart disease

This study investigates the long-term impact of early-term birth (37-38 weeks’ gestation) relative to full-term birth on neurodevelopmental and psychiatric outcomes in adolescents who underwent the Fontan procedure. We evaluated 133 adolescents with congenital heart defect stratified by gestation term (early-term versus full-term) on a variety of measures including executive functions, social cognition, memory and attention as well as psychiatric symptoms including depression, anxiety and post-traumatic stress. This research found that early-term birth is associated with a greater prevalence of executive dysfunction, ADHD diagnosis and mental health problems in adolescents with single-ventricle congenital heart defect. This study will help investigators better target potential perinatal risk factors for closer developmental surveillance in congenital heart defect.

Published article: Calderon J, Stopp C, Wypij D, DeMaso DR, Rivkin M, Newburger JW, Bellinger DC. Early-term Birth in Single Ventricle Congenital Heart Disease after the Fontan Procedure: Neurodevelopmental and Psychiatric Outcomes. J Pediatr. 2016; 179:96-103. https://www.ncbi.nlm.nih.gov/pubmed/27692462

Psychiatric disorders in adolescents with single ventricle congenital heart disease

Mental health outcomes for survivors of critical congenital heart defect remain under-investigated. This study examined psychiatric disorders and psychosocial functioning in adolescents with single ventricle congenital heart defect and explored whether patient-related risk factors predict dysfunction. This cohort study recruited 156 adolescents with single ventricle congenital heart defect who underwent the Fontan procedure and 111 healthy referents. Participants underwent comprehensive psychiatric evaluation including a clinician-rated psychiatric interview and parent- and self-report ratings of anxiety; disruptive behavior, including attention-deficit/hyperactivity disorder (ADHD); and depressive symptoms. Risk factors for dysfunction included IQ, medical characteristics and concurrent brain abnormalities. Adolescents with single ventricle congenital heart defect display a high risk of psychiatric morbidity, particularly anxiety disorders and ADHD. Early identification of psychiatric symptoms is critical to the management of patients with congenital heart defect.

Published article: DeMaso DR, Calderon J, Taylor GA, Holland JE, Stopp C, White MT, Bellinger DC, Rivkin MJ, Wypij D, Newburger JW. Psychiatric Disorders in Adolescents with Single Ventrice Congenital Heart Disease. Pediatrics. 2017. doi: 10.1542/peds.2016-2241. https://www.ncbi.nlm.nih.gov/pubmed/28148729

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