Article authored and provided by Texas Children's Heart Center as part of a paid partnership with NSGC. The content, views and opinions expressed in this article are those of Texas Children's Heart Center, and do not necessarily reflect the opinions and views of the National Society of Genetic Counselors.
Inside the nation’s No. 1 pediatric heart center, Texas Children’s Heart Center, world-renowned leaders in cardiovascular genetics provide advanced diagnostic and longitudinal care to families with cardiovascular conditions that may be genetically mediated.
The Cardiovascular Genetics Program, a collaborative of physicians, advanced practice providers, genetic counselors and nurses, provides a variety of services to patients, who may be referred by primary care physicians and specialists from across the country. They not only help families understand why their child has a heart condition, but also coordinate testing for other family members who may be affected. Subsequently, the team provides consultation and longitudinal care, ensuring that children and families with rare genetic conditions are receiving the most leading-edge care. The team includes experts in both common and rare hereditary heart diseases, with a specialty focus on four key genetic disorders:
- Heritable aortic disease (aortopathy)
- Congenital heart disease
- Genetic arrhythmias
“We provide one of the most comprehensive cardiovascular genetics programs for children in the country,” said Shaine Morris, MD, MPH, medical director of the program. “We want to convey to patients that the genetic diagnosis is a key that opens the door to lifesaving medical care for them.”
Care for the whole family
While pediatric cases are typically the entry into the program, one of its unique aspects is the ability to provide care for the entire family affected. In some cases, a parent’s condition is the impetus for pediatric care; in others, genetic testing reveals that other family members may need further evaluation or care. Texas Children’s Hospital coordinates that testing across the age span, providing a holistic, family centered approach in which the entire family benefits.
The heart center’s strong Adult Congenital Heart Program, developed in 2004, enables family care from a team that includes specialists in genetically mediated aortopathy, arrhythmias and cardiomyopathy. The multidisciplinary team of specialists is trained in both pediatric and adult disease. “Often, the entire family is affected. Seeing them in one program helps ensure their care is well coordinated,” said Dr. Morris. “Once you’re a Texas Children’s cardiology patient, this can be your medical home for life.”
Studying genetics to unlock future care
One of the ways the team ensures patients are receiving leading-edge care is by connecting them to clinical trials for which they are eligible. Here, too, being housed within the Heart Center offers another benefit, i.e., the large patient volume facilitates the Cardiovascular Genetics Program team’s ability to collect and conduct research for some of the rarest diseases in the world.
“We can identify and understand patterns in a way that isn’t possible with smaller cohorts,” Dr. Morris said. For example, the team is conducting research to help determine how best to predict adverse events in young people with Marfan syndrome and related disorders and improve outcomes. The team also is studying how best to risk stratify and treat patients with ultrarare conditions like vascular EhlersDanlos syndrome, arterial tortuosity syndrome and FLNA deficiency.
Members of the team also are conducting research into disorders that cause arrhythmias and sudden death, funded through the National Institutes of Health (NIH). The purpose of these studies is to identify the diagnosis of specific disorders; understand the clinical course; and improve treatment, psychological well-being and outcomes for children, adults and all family members with arrhythmia conditions.
Research is also ongoing to determine the mechanisms of TANGO2 disorder, aneurodevelopmental disorder caused by mutations in the TANGO2 gene that can result in metabolic crisis events and cardiac arrhythmias. In this study, patients’ blood is used to replicate their heart cells in order to test therapeutic approaches and gain understanding of the etiology of abnormal heart rhythms.
Available for diagnosis, counseling and cardiovascular management
The Cardiovascular Genetics Program continues to grow. Having recently added more members to the team, wait times for an appointment are generally less than one month.
“Our team works hard to get any urgent referrals in as quickly as possible,” Dr. Morris said. “We also provide consults to a patient’s cardiologist so they can be cared for by their established team. Longitudinal care here is optional.”
Learn more about the Cardiovascular Genetics Program and call 832-824-3278 to make a referral.