Congenital Heart Center Clinical Research

Our multidisciplinary team conducts a variety of research projects aiming to drive evidence-based clinical treatment decisions and interventions, and to ultimately improve care and outcomes for children with heart disease.

Long-term outcomes, quality of life, and neurodevelopment

Quality of Life

Our overall goal is to determine the optimal treatments to allow children with congenital heart disease to thrive and enjoy an excellent long-term quality of life into adulthood. Through projects aimed at understanding longer-term outcomes such as need for re-interventions, neurodevelopment, and long-term cardiac, kidney, and liver function, we are making strides in identifying treatments that will improve these outcomes.  

 We also aim to better understand and treat more rare complications that can impact long-term survival and quality of life, such as plastic bronchitis and protein losing enteropathy in single ventricle patients

In addition, we are engaged in research to promote transition of congenital heart patients to adult care. We aim to reduce loss of patients to follow-up care and to promote a successful transition to adulthood in order to maximize physical health and quality of life.

Our research in these areas has also informed our clinical practice. For example, our standard of care following congenital heart surgery now involves routine serial developmental assessments through our Neurodevelopmental Follow-up Program led by Caren Goldberg, MD, and Jennifer Butcher, PhD. Early identification of any concerns allows for timely referral for any necessary therapies to optimize the potential for these children to live the fullest and highest quality lives.

For more information, please contact Dr. Caren Goldberg.

Pediatric Cardiac Critical Care Consortium (PC4)

PC4

PC4 is  an international, multi-center quality improvement collaborative geared toward improving outcomes for critically ill children with heart disease, led by U-M pediatric cardiac intensivist, Dr. Michael Gaies. The registry provides unique real-time performance feedback and benchmarking to member institutions on both medical and surgical patients hospitalized in the cardiac ICU. Participating sites also commit to sharing data and collaborating with one another to identify care processes and hospital structures that differentiate high-performing centers.   These practices will be disseminated and implemented throughout the collaborative with the goal of improving outcomes and quality of care for these vulnerable children.  The M-CHORD Program within the U-M Congenital Heart Center serves as the Data Coordinating and Analytic Center for PC4Learn more about PC4.

For more information, please contact Dr. Michael Gaies.

Optimizing quality and efficiency of care delivery

Dr. Sara Pasquali and colleagues at the U-M Congenital Heart Center lead national efforts to develop measures of high quality care for children with congenital heart disease.  We aim to better understand healthcare policies, structure, and processes associated with optimal outcomes in children’s hospitals across the United States. In addition, we are interested in providing care more efficiently, and our research has suggested that that high quality care is likely to be associated with reduced healthcare costs. Our national efforts, supported by the National Heart, Lung, and Blood Institute, translate to improved quality of care for patients treated at the U-M Congenital Heart Center. For example, recent efforts to standardize the care for patients with post-operative chylothorax have led to earlier diagnosis and reduced length of mechanical ventilation and hospital stay for these children.

For more information, please contact Dr. Sara Pasquali.

Pediatric Heart Network Core Site

Pediatric Heart Network

The University of Michigan C.S. Mott Children’s Hospital is one of only nine Pediatric Heart Network (PHN) core sites.  The PHN, funded through the National Heart, Lung, and Blood Institute, consists of a consortium of congenital heart centers working together to address important clinical questions impacting children with heart disease.  Collaboration is key, as it allows for the study of rare conditions for which any one center may have limited experience and a limited number of patients. The PHN Single Ventricle Reconstruction Trial, led by U-M Congenital Heart Center Co-Director Dr. Richard G. Ohye, was the first multi-center congenital heart surgery randomized trial ever accomplished. Our center participates in multiple ongoing PHN investigations geared toward answering diverse issues in our field. U-M Congenital Heart Center investigators also lead the PHN biorepository, which manages DNA storage for PHN studies, and the PHN Integrated CARdiac Data and Outcomes (iCARD) Collaborative, which integrates data across multiple sources to conduct novel studies and support more efficient research. 

Faculty leading PHN efforts at U-M include Dr. Caren Goldberg, Dr. Richard Ohye, and Dr. Sara Pasquali (co-principal investigators).

For more information, please contact Dr. Caren Goldberg.