Clinical Registries

The aim of the International Fetal Cardiac Intervention Registry (IFCIR) is to improve the care and outcome for mothers and babies when the pregnancy is complicated by congenital heart disease in the fetus. Specifically, through this website we share our experiences, protocols, technical aspects and outcome data for fetal patients with congenital heart disease potentially amenable to intervention before birth.

Site PI: James Strainic, MD

IMPACT is a multi-institutional dataset to support the development of evidence-based guidelines and review performance standards to guide quality improvement initiatives in congenital heart disease patients that undergo interventional catheterizations.

Site PI: Martin Bocks, MD

University Hospitals participates in the Congenital Cardiac Catheterization Project Outcomes (C3PO) collaborative. This is a multi-center dataset that seeks to develop methods to assess and compare outcomes of catheterization procedures treating various forms of congenital heart disease. This registry also contains a risk calculator that allows team members to anticipate a patient’s risk of adverse events and resource utilization to optimize delivery of patient care.

Site PI: Martin Bocks, MD

University Hospitals is an active participant in the Congenital Cardiovascular Interventional Study Consortium (CCISC). This organization is devoted to the advancement of the science and treatment of patients requiring interventional procedures to treat congenital heart disease. Within the CCISC UH also participates in the coarctation registry, which compares surgical vs. balloon angioplasty vs. intravascular stenting for recurrent or native coarctation of the aorta.

Site PI: Martin Bocks, MD
Team Members: Emily Kish, RN, Katie O’Neill, PNP

Anomalous aortic origin of a coronary artery with interarterial or intraconal or intramural course is a rare congenital anomaly that consists of either the left main coronary arising from the right sinus of Valsalva (ALCA) or the right coronary arising from the left (ARCA). Both carry an increased risk of myocardial ischemia and sudden death in children and young adults, especially during or just after exercise. The purpose of the study is to determine the outcome of surgical intervention versus observation in children and young adults with AAOCA. The ultimate goal is to develop a risk stratification model utilizing a large multi-institutional registry under the auspices of the Congenital Heart Surgeons’ Society (CHSS).

Site PI: Eric Devaney, MD, Allison Tjan PA-C, MPAS

University Hospitals Rainbow Babies and Children’s Hospital is an active member of PAC3, a network of pediatric cardiology care centers that partners with national parent advocacy groups and other national medical collaborative organizations that aim to improve the quality, value, and experience of inpatient pediatric cardiac care. The ultimate goal of the collaborative is to improve pediatric cardiac acute care outcomes by fostering sustainable and collaborative quality improvement initiatives.  Specific goals include reduction of acute care complications, length of stay, and readmission rates while improving the patient, family, and staff experience.

PI: John Lozier MD
Team members: Sarah Plummer MD, Silvestre Duran, MD, Cate VanDerkolk NP, Ashley Hart NP, Susan Bergant RN

Active projects:

• Lasix Duration Following Hospital Discharge from Non-Complicated Cardiac Surgery
• Reducing Chest Tube Duration in Pediatric Patients after Cardiothoracic Surgery
• Hospital Readmissions After Discharge from a Pediatric Cardiac Acute Care Unit
• Post-operative Nutrition Strategies in Infants and Children after Cardiac Surgery

University Hospitals is a member of NPC-QIC, an international network of pediatric cardiology care centers and registry that focuses on improving the survival and quality of life of patients with a univentricular heart.  Their initial efforts focused on improving morbidity and mortality during the “interstage” period following the Norwood operation (between their first and second heart surgeries). While this continues to be an area of interest, NPC-QICs most recent efforts have expanded their focus to improving outcomes and quality of life through the first year of life.

PI: Sarah Plummer, MD
Program Coordinator: Jodi Zalewski, CPNP
Nurse Navigator: Shannon Bilsky, RN

Active projects:

• Reduction in Unplanned Reinterventions during the Norwood Post-operative Hospitalization

University Hospitals Rainbow Babies & Children’s Hospital is an active member of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) which is a multicenter, multinational, multidisciplinary inclusive group that works together and partners with families to optimize neurodevelopmental outcomes for patients with congenital heart disease through clinical, quality, and research initiatives.  As part of our membership in CNOC, we have developed our institutional cardiac developmental follow-up program, the Cardiac Neurodevelopmental Initiative (CaNDI). Our CaNDI program offers a complete developmental assessment and referral program for children with congenital heart disease from infancy through age 18 years of age.

Site PI: Sarah Plummer MD
Program Coordinator: Cate VanDerKolk NP
Nurse Navigator: Shannon Bilsky RN
Team Members: Catherine Scherer MD, Rachel Tangen PhD

University Hospitals Rainbow Babies & Children’s Hospital participates in ACPC’s QNet, a national network of congenital heart disease centers dedicated to collecting and sharing data, collaborating, and developing best practices. QNet has built metrics across several domains in pediatric cardiology and congenital heart disease with the goal of engaging participants in quality measurement and improvement. Participation in the network is crucial to building an effective data set that will drive quality improvement and advance the development and delivery of adult CHD and pediatric cardiology standards of care.

PI: Sarah Plummer MD
Team Members: Susan Bergant RN, Martin Bocks MD, Carolyn Wilhelm MD

Active projects:

• Appropriate Counseling Among Pediatric Cardiac Patients with BMI Greater than 85%
• Genetic Testing in Tetralogy of Fallot