• By Terri Malloy

Mayo Clinic, Children’s of Alabama announce rare congenital heart defect collaboration

November 25, 2019
man and woman holding plastic heart

BIRMINGHAM, Ala. — Mayo Clinic's Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Children's of Alabama announce their collaboration within a consortium to provide solutions for patients with hypoplastic left heart syndrome, a rare and complex form of congenital heart disease in which the left side of the heart is severely underdeveloped.

The consortium aligns regional medical centers of excellence and advocacy groups with the shared goal of finding solutions for people affected by congenital heart disease, including HLHS. The nationwide consortium, which was developed by Mayo Clinic's Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome, works to accelerate innovation and discovery science by bringing clinical trials and expertise to patients across the country.

"The HLHS Consortium is really a movement of inspired leaders who believe we can do things differently," says Tim Nelson, M.D., Ph.D., director of Mayo Clinic's Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome. "We are expecting to do things faster than ever before, and we know that bringing in the hardworking efforts and outstanding outcomes of Children's of Alabama will help enhance our research."

Children's of Alabama is the 10th member of the HLHS Consortium, joining Children's Hospital Colorado, Children's Hospital Los Angeles, Children's Minnesota, The Children's Hospital at OU Medicine, Children's Hospital of Philadelphia, Cincinnati Children's, Mayo Clinic, and Ochsner Hospital for Children, as well as the advocacy group Sisters by Heart.

The Pediatric and Congenital Heart Center at Children's of Alabama is one of the largest pediatric cardiovascular programs in the Southeast, providing care for more than 12,000 patients a year. The program, which is led by Robert Dabal, M.D., chief of Pediatric Cardiothoracic Surgery, and Waldemar F. Carlo, M.D., director of Heart Transplantation, is a joint cooperative with The University of Alabama at Birmingham.

"The heart specialists at Children's of Alabama combine knowledge and experience to care for infants and children with hypoplastic left heart syndrome, and we are excited that this new collaboration with Mayo Clinic gives us the opportunity to continue paving the way for more research about congenital heart defects," says Dr. Carlo, a pediatric cardiologist at Children's of Alabama. "Joining this esteemed group of health care providers brings us closer to even more resources for our patients and their families." Dr. Carlo is an assistant professor in the Division of Pediatric Cardiology at The University of Alabama at Birmingham.

Pictured left to right: Dr. Waldemar F. Carlo, Dr. Tim Nelson, Children’s of Alabama CEO and President Mike Warren and Dr. Dabal.
Pictured left to right: Dr. Waldemar F. Carlo, Dr. Tim Nelson, Children’s of Alabama CEO and President Mike Warren and Dr. Dabal.

Children's of Alabama plans to soon begin enrolling patients in the consortium's phase II stem cell therapy clinical trial for infants with hypoplastic left heart syndrome. During the second of three surgeries to repair the heart, stem cells from the baby's own umbilical cord blood are injected into the heart muscle to help it grow stronger, and delay or prevent the need for transplant. The phase I clinical trial results were published in July, demonstrating that this procedure is safe and feasible.

As part of the phase I study, 23 patients were treated successfully. The larger trial is now open across the consortium. To date, 18 patients have been treated as part of the phase II study. Children's of Alabama began collecting cord blood earlier this year.

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About the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome
Founded in 2010, the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for people affected by congenital heart defects, including hypoplastic left heart syndrome. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

About Children's of Alabama
Since 1911, Children's of Alabama has provided specialized medical care for ill and injured children, offering inpatient and outpatient services throughout central Alabama. Ranked among the best pediatric medical centers in the nation by U.S. News & World Report, Children's of Alabama provided care for youngsters from every county in Alabama, 42 other states and seven foreign countries last year, representing more than 677,000 outpatient visits and more than 15,000 inpatient admissions. With more than 3.5 million square feet, Children's of Alabama is one of the largest pediatric medical facilities in the United States. More information is available at childrensal.org.

About Mayo Clinic
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news and An Inside Look at Mayo Clinic for more information about Mayo.

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