Inherited Cardiovascular Disease

Overview

Inherited Cardiovascular Disease (or ICVD) is an umbrella term to describe several cardiac conditions that may be inherited or passed down from parents to child. As part of the Cardiovascular Genetics program, the ICVD Clinic specializes in the care of children with inherited and congenital heart disease and identifying genetic causes of these conditions in families.

Mission

Our mission is to take a family-centered approach as we bring together a comprehensive multidisciplinary team to provide:

• Multidisciplinary care: Our team takes a multidisciplinary approach to your child’s care and works with many different specialties within Cleveland Clinic, including pediatric thoracic surgery, pediatric orthopedics, pediatric psychology, genetics and more.
• Family-centered approach: We understand the importance of taking a family-centered approach to your child’s care and oversee family screenings, medical management, surgical management and sports and lifestyle management and exercise prescription.
• Collaboration with adult cardiology: Often it's important to have the entire family screened so our team works closely with the adult program at Cleveland Clinic to provide efficient family screenings.
• Genetic counseling: Genetic counselors are essential members of the team and facilitate the process of identifying gene markers for these diagnoses.

What We Treat

Diagnoses seen within the Inherited Cardiovascular Disease Clinic include the following: 

• Marfan syndrome.
• Loeys Dietz syndrome.
• Ehlers Danlos.
• Bicuspid aortic valve.
• Aortic root dilatation.
• Aortic dilatation.
• Family history of aneurysm/dissection.
• Turner syndrome.
• Neurofibromatosis.
• Hypertrophic cardiomyopathy (HCM).
• Noonan syndrome.

Our Team

Pediatric and Adult Congenital Heart Center

• Bradley Marino, MD, Department Chair
• Hani Najm, MD, Chair, Pediatric and Congenital Heart Surgery

Cardiology Team

• Jeffrey Bennett, MD, PhD, Director, Cardiovascular Genetics
• Kenneth Zahka, MD
• Nicole Rush, CNP
• Meg Leone, BSN, RN

Cardiovascular Clinical Genetics

• Joseph Liu, MS, CGC

Learn more about Cardiovascular Clinical Genetics.

Interprofessional Team Members

• Abigail Demianczyk, PhD

We also closely partner with various specialties within Cleveland Clinic Children’s, along with cardiology specialists in the Heart, Vascular & Thoracic Institute, to provide your child with an individualized, comprehensive plan to meet all their healthcare needs.

Appointments

By Phone

To make an appointment, please call 216.445.5000. 

Online 

• After obtaining a formal referral from your existing medical team, instantly book an appointment through MyChart.
• Need to cancel or reschedule? View your upcoming appointments and make any changes you need.

Physician Referrals 

Mon. - Fri., 8 a.m. - 5 p.m. (ET)
Call 216.445.5000 or email cardiacgenetics@ccf.org  

Before Your Appointment 

Our team will discuss with you the best way to obtain your records for our review prior to your appointment. Depending on your unique situation we may be able to view your records electronically via our EPIC and Care Everywhere systems or may need to request that your records be faxed and/or mailed to our office. These records may include your medical history, test results and films (echocardiogram, right heart catheterization, ultrasound, chest X-ray, MRI, CT scan, etc.). 

Request information from other facilities to be released to Cleveland Clinic: 

After talking with our team, you may need to give Cleveland Clinic access to outside medical records, you will need to authorize release from your current medical provider(s). Our team may ask you to complete the form and send it to your non Cleveland Clinic provider for processing.

• Authorization for the Release of Medical Information From Other Healthcare Facilities
• Authorization for the Release of Medical Information From Other Healthcare Facilities (Spanish)

What to Expect at your Appointment

Whether you are coming from around the corner or around the world, you want to know what to expect before, during and after your visit with us. If you have any questions while reviewing this information, please contact us. We are happy to answer any questions you may have. 

Prior to your initial appointment, our Nurse Care Coordinator will call you. During this phone call, they will gather information including medical history, family history, previous pertinent testing, and your main concern or goals for this visit. Please see the appointment tab for additional information on obtaining medical records. 

During your initial visit, you will with meet with our cardiovascular genetic team to review your medical history and records, perform a physical exam, and advise on consultations with other specialists. If additional testing or consultations are recommended, our team will help to coordinate these visits with you along with a follow up visit.

Resources

Dilated Cardiomyopathy Foundation

Formed in 2017 by a DCM Patient and a noted Heart Failure Cardiologist and DCM Genetic Researcher, the DCM Foundation’s mission is to provide HOPE and support to DCM Patients and Families with Dilated Cardiomyopathy through education, research and advocacy.

Ehlers Danlos Society

The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.

HCMA (Hypertrophic Cardiomyopathy Association)

The HCMA was founded in 1996 as a 501c3 nonprofit organization. We provide support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy while supporting research and fostering the development of treatments.

Loeys Dietz Foundation

The Loeys-Dietz Syndrome Foundation (LDSF) is dedicated to:

• Encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and lay communities in order to aid in identification, diagnosis, and treatment of Loeys-Dietz syndrome fostering research about Loeys-Dietz syndrome.
• Providing a support network for individuals, parents, and families affected by Loeys-Dietz syndrome.

The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation.

Marfan Foundation

The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome (VEDS), and other genetic aortic and vascular conditions.

Medline Genetics

MedlinePlus is an online health information resource for patients and their families and friends. This specific website contains additional information on genetics terminology.

The VEDS Movement (Vascular EDS)

The VEDS Movement mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS). By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, we can charge forward and improve the outcomes for those living with VEDS.

Williams Syndrome Association

The Williams Syndrome Association (WSA) works to advance the interests of all individuals with Williams syndrome throughout their lifespan by providing programming and resources, supporting research, promoting partnerships and connections, and ensuring that the infrastructure of the organization has the capacity to lead our community toward its goals.