National Study Groups

Improving Pediatric and Adult Congenital Treatment (IMPACT)

-National Cardiovascular Data Registry’s (NCDR) 6th national clinical data registry
-launched by the American College of Cardiology

Purpose
• To help clinicians assess the prevalence, demographics, management and in-hospital outcomes of child and adults with congenital heart disease (CHD) who undergo diagnostic catheterizations and catheter-based interventions

Goals
• Allows participating sites to collect CHD data and receive benchmark reports that will allow them to measure their performance compared to other centers as well as guide quality improvement efforts to improve patient outcomes
• A multi-institutional data set to support the development of evidence-based guidelines
For additional information visit the IMPACT Registry webpage here.

National Pediatric Cardiology Quality Improvement Collaborative

Our team at NYU is involved in a national collaborative to monitor babies with single ventricles at home, while the babies grow and thrive. The Home Monitoring program is part of a National Pediatric Cardiology Quality Improvement Collaborative: a JCCHD Initiative. The mission of this collaborative is to improve the outcomes of children with congenital heart diease. This includes the NYU Congenital Cardiac Program being involved in a collaborative network involving all pediatric cardiologists in North America, utilizing a database to inform future improvement and research projects. The Home Monitoring Program is specifically focused on improving the survival and reduce morbidity of infants with hypoplastic left heart syndrome (HLHS) between the stage 1 (Norwood) and stage 2 (Glenn) operations. The goal of this monitoring program is to develop a simple, reliable strategy to detect physiological variances such as weight loss or decreased saturations, between these two operations to allow for early and safe intervention.

For more information on our Home Monitoring Program please contact:

Catherine Bull, ARNP-BC

Caitlin Crowley, MSN, PNP 

Anne Chun, M.D. 

Congenital Heart Surgeons Society

Anomalous Aortic Origin of a Coronary Artery (AAOCA) Study

Overall Goal and Objectives:
Develop a registry of children and young adults with Anomalous Aortic Origin of a Coronary Artery (AAOCA) with an interarterial, intraconal or intramural course
• Characterize the natural and unnatural history of AAOCA
• Characterize outcomes after interventions for AAOCA
• Develop models to identify patients in whom the risk of observation is greater than the risk of intervention and, conversely, patients in whom the risk of intervention is greater than the risk of observation

Context:  Anomalous aortic origin of a coronary artery with interarterial or intraconal or intramural course (AAOCA) is a rare heart anomaly associated with a high risk of sudden death in children. There is debate among cardiologists and cardiac surgeons regarding how to treat a child with AAOCA, especially those who do not have symptoms.

Objectives: The purpose of the study is to determine the outcome of surgical intervention versus observation in children and young adults with AAOCA.   To do this we will create a risk stratification model utilizing a large multi-institutional registry under the auspices of the Congenital Heart Surgeon Society (CHSS).  This will enable us to test the hypothesis that subsets of subjects with AACOA can be identified in whom the risk of intervention is less than the risk of observation. 

Study Design/Setting/Participants: This is a retrospective and longitudinal cohort study.  Subjects will be enrolled either when identified from medical records or when diagnosed with AAOCA.  Baseline demographics, diagnoses, and test results will be obtained through retrospective chart review.  Follow-up health-related information will be obtained through annual questionnaire.  The project will be carried out at several participating CHSS member institutions, with the data stored and analyzed at the CHSS Data Center. 

Study Measures: Data will be analyzed for different risk factors at diagnosis, different treatment strategies and the impact of both on subject outcome. 

Contact: Ralph Mosca, M.D.  ralph.mosca@nyumc.org

http://www.chssdc.com/studies