Heart Center Research

Our multidisciplinary team of physician-scientists conducts various research projects to advance the field, he​lp promote patient care and better educate families.

Pediatric Heart T​ransplant Research

Physicians most recently have studied various topics related to pediatric heart transplant, in​cluding:

  • Immunosuppression using Sirolimus
  • Presence of donor-specific antibodies
  • Multicenter study of ECMO in infants post transplant
  • Exercise testing in heart transplant recipients
  • Outcomes following ABO: incompatible heart transplants

The team also participates in the Pediatric Heart Transplant Study. Both Elfriede Pahl, MD, and Jeffrey G. Gossett, MD, have been lead investigators on projects.

Dr. Pahl is the site principal investigator for the Pediatric Cardiomyopathy Registry (PCMR). Additionally, she is the site principal investigator for NIH-funded studies on genotyping of children with cardiomyopathy and biomarkers in cardiomyopathy. Lurie Children’s is one of 11 pediatric hospitals participating in this collaborative, government-funded study.

As the primary investigator for Transit, in partnership with co primary investigator Kathleen Grady, PhD, from Northwestern Memorial Hospital, the team is coordinating with nine partner hospitals in the NIH-funded study to provide educational intervention to adolescents with heart transplants to improve transition to an adult facility. Educational intervention helps the patients learn to manage their own care as they mature into adulthood.

Marfan Syndrome Research

  • The Marfan Trial was a multi-center clinical trial that compared the effects of beta blocker therapy (atenolol) to those of angiotensin II receptor blocker therapy (losartan) in individuals with Marfan syndrome. The study found that losartan is as effective as atenolol in leading to a significant decline in body size-indexed aortic root dimension over time. The study also showed a stronger response in younger age groups, suggesting that beginning therapy early in the disease course may be provide a greater benefit. Read the press release to learn more.
  • The Marfan Trial genetic ancillary study aims to assess how genetic and phenotypic variations affect response to treatment in patients with Marfan syndrome receiving atenolol and losartan.
  • The Marfan Quality of Life Study aims to describe the quality of life for individuals with Marfan syndrome to normative data using standardized tools. The study is currently closed, but results are not yet available.
  • The Circulating TGF-β levels in Marfan syndrome study aims to determine if circulating TGF-β levels correlate with specific treatment arms in the Marfan Trial (i.e., atenolol versus losartan). The study is currently closed, but results are not yet available. 
  • The Development of a Blood Test for Marfan Syndrome is a multicenter study which aims to identify differences in proteins that reflect genetic abnormalities in people with Marfan syndrome. The hope is to develop a non-genetic biomarker test to identify patients at high risk for aortic complications. Joseph Camarda, MD, and Elizabeth Cappella, APN, are the local investigators collaborating on this ongoing study.

Clinical and Translational Research

  • Our cardiovascular-thoracic surgery team has participated in the Society of Thoracic Surgeons Congenital Heart Surgery national database since its inception in the mid-1990s. The national database contains de-identified, HIPAA-compliant patient data that helps our center benchmark its outcomes against that of other centers nationwide. Learn more about our volumes and outcomes.
  • Lurie Children's Cardiac Imaging team is leading several research inititatives. Learn more.
  • The multidisciplinary MR/CT program is leading research to reduce MR imaging exam time and minimize anesthesia or sedation used during imaging exams. In the multi-year NIH/NHLBI funded study, Functional Cardiovascular 4D MRI in Congenital Heart Disease, Lurie Children's cardiologist Joshua Robinson, MD, and radiologist Cythia Rigsby, MD, are collaborating with Northwestern bioengineers to develop a comprehensive 20-minute 4D MR exam that might replace the standard 60-90 minute MRI protocol. In addition to studying how the new technique may reduce exposure to anesthesia, the team is investigating how 4D visualization of complex blood flow dynamics may predict progression of cardiovascular disease. Learn more about medical imaging research.
  • Joshua Robinson, MD, Elizabeth Cappella, APN, and Bradley Marino, MD, are collaborating with Northwestern Memorial Hospital on the Bicuspid Aortic Valve Registry. The joint partnership between the Lurie Children’s and Bluhm Cardiovascular Institute’s Bicuspid Valve Programs has created a centralized database to collect clinical information about the physiologic and genetic mechanisms of BAV in order to improve long-term outcomes.
  • Jeffrey G. Gossett, MD, is participating in the Joint Council on Congenital Heart Disease: National Collaborative to Improve Care of Children with Complex Congenital Heart Disease. This first specific study is implementing a quality improvement project intended to improve survival and quality of life of infants with HLHS during the "interstage" period between discharge from Stage 1 Norwood and admission for Stage 2 bidirectional Glenn. Read more about the national collaborative.
  • Clinically silent genetic diseases may be responsible for as many as 25% of sudden unexplained deaths between 1 and 35 years of age. Given this high genetic incidence, a sudden unexpected death in a family member is a signal that other relatives may also be at risk for sudden death. Pediatric cardiac electrophysiologist R. Gregory Webster, MD, is engaged in research focusing on two issues that might prevent optimal evaluation of first-degree relatives of victims. First, we do not yet understand which clinical tests will lead to a diagnosis in the family. Second, no studies have evaluated how often genetic mutations are new mutations in the deceased child versus familial mutations present in the family. Dr. Webster’s research is a partnership between Lurie Children’s, medical examiners in Illinois and the Cardiovascular Genetics Center at Northwestern University. This collaboration provides a unique ability to identify clinical and genetic risk factors for sudden unexplained death in young persons and their family members.

Cardiac Critical Care Clinical Research

The Heart Center’s critical care clinical research includes:

  • Steroid use and its effect on the stress response after open-heart surgery
  • The optimal timing of birth in neonates with critical congenital heart disease
  • Outcomes for patients with genetic syndromes who are supported with ECMO

More About Research and Clinical Trials

Find additional information and resources about the center’s research and clinical trials online:

Below are lists of additional clinical studies and our researchers.

Sudden cardiac arrest in children is a devastating occurrence. When the cause of death stems from inherited diseases of the heart’s electrical system or the heart muscle, prompt diagnosis of other family members could be lifesaving, allowing clinicians to intervene before a parent or a sibling suffers cardiac arrest.

But because standard autopsies do not always reveal inherited cardiac anomalies, it can be difficult to determine whether the culprit was a hereditary heart disease or something else.

To help improve the likelihood of detecting cardiac anomalies passed down in families, Gregory Webster, MD, MPH, a cardiologist at Lurie Children's has teamed up with colleagues from Northwestern University Feinberg School of Medicine to trace the footprints of genetic heart disease in young people who died suddenly and whose cause of death has not been determined through traditional autopsy.

- See more at: https://www.luriechildrens.org/en-us/news-events/Pages/molecular-detectives-track-genetic-footprints-heart-disease_326.aspx#sthash.blMaDB1g.dpuf

Tracking the Genetic Footprints of Heart Disease

Sudden cardiac arrest in children is a devastating occurrence. But it can be difficult to determine whether the culprit was a hereditary heart disease or something else.

To help improve the likelihood of detecting cardiac anomalies passed down in families, Gregory Webster, MD, MPH, has teamed up with colleagues from Northwestern University Feinberg School of Medicine to trace the footprints of this disease

Learn more.