Families with Cardiomyopathy Clinic

The Families with Cardiomyopathy Clinic offers evaluation and treatment for patients with familial cardiomyopathy. In our unique approach, the whole family is seen during the same clinic visit. Examining cardiomyopathy in parents and children at the same time allows us to develop specialized treatment plans that are customized to your family’s genetic needs. Also, combining the parents’ cardiac visit with their children’s visit allows for fewer trips to the cardiologist, and fewer missed school and work days. We also offer ongoing treatment, second opinions and genetic evaluation.

The clinic is a collaboration between Lurie Children’s Heart Center and the Bluhm Cardiovascular Institute at Northwestern Memorial Hospital. It is the only clinic of its kind in Illinois.

Eligibility

The Families with Cardiomyopathy Clinic is open to families with inherited cardiomyopathies. Cardiomyopathy can be inherited when there is either a family history of cardiomyopathy or the cause cannot be identified. When cardiomyopathy is suspected to be inherited, a cardiovascular genetics evaluation can be helpful in diagnosing and treating the patient and the family.

When an underlying genetic cause of the cardiomyopathy is identified, it is helpful to study other family members with the same genetic makeup to learn about how the disease has or has not progressed in them. This can help us determine how the gene mutation is acting in this particular family.

Whether a gene mutation has been identified as the cause or genetic studies are needed, we welcome families to come to clinic together for evaluation.

Families with the following diagnoses are welcome:

  • Dilated cardiomyopathy
  • Hypertrophic cardiomyopathy
  • Restrictive cardiomyopathy
  • LV noncompaction
  • Muscular dystrophies

Services

The services provided at the clinic include:

  • Cardiology evaluation for the whole family by an adult cardiologist and pediatric heart failure cardiologist all within the same setting.
  • Cardiac screening, including EKGs and echocardiogram imaging, will be coordinated on the same day as the family clinic appointment.
  • Family tree analysis for individual and family member risk assessment.
  • Genetic counseling concerning genetics, inheritance and gene testing.
  • Pediatric and adult genetic testing, if necessary, will be performed the day of the clinic visit at Lurie Children’s.
  • Strategies for cardiomyopathy prevention and screening for the whole family.

Our Specialists

Elfriede Pahl, MD

Dr. Pahl is Medical Director of Heart Failure and Heart Transplantation at Lurie Children’s. She has more than 25 years of experience treating children with cardiomyopathy. Lurie Children’s is one of 11 children’s hospitals in the nation participating in the Pediatric Cardiomyopathy Registry (PCMR) network. Dr. Pahl is the site investigator for two NIH-funded government trials in children with cardiomyopathy. Her research interests are in quality of life and outcomes in cardiomyopathy, as well as in newer therapies for treating patients affected with cardiomyopathy (both dilated and hypertrophic).

Philip Thrush, MD

Dr. Thrush is a Pediatric Cardiologist specializing in heart failure and transplant with special interest in biomarkers that can predict outcomes in children with cardiomyopathy and after heart transplant. His research has focused on pediatric heart transplant recipients and the evaluation and treatment of cardiomyopathy associated with Duchenne muscular dystrophy.

Elizabeth Lakani, MSN, APN

Elizabeth Lakani is a Heart Transplant and Pediatric Cardiology Nurse Practitioner with a special interest in children with cardiomyopathy. She has over 9 years of experience working with pediatric patients. She will be available to answer questions before and after clinic visits for pediatric patients.

Elizabeth McNally, MD, PhD

Dr. McNally is a cardiologist specializing in inherited cardiovascular diseases. She established one of the first Cardiovascular Genetics Clinics in the nation and brings decades of experience to this family clinic. In addition to seeing patients for diagnosis and treatment, she is the Director of the Center for Genetic Medicine at Northwestern University. Her research focuses on identifying the molecular genetic causes of cardiomyopathies and other inherited forms of cardiac disease.

Because of her role as both a clinician and researcher, Dr. McNally applies insights into the very latest worldwide findings on cardiovascular disease to the care that she provides for patients. Patients here benefit from the newest knowledge of the most effective methods of treatment and prevention.

Lisa Castillo, MS, CGC

Lisa is a Certified Genetic Counselor specializing in inherited cardiovascular diseases and inherited neuromuscular diseases. She plays an integral role in meeting with patients and their families, obtaining detailed family and medical histories, coordinating genetic testing and explaining the results and implications of genetic testing. She has over 10 years of experience working with patients and their families with neuromuscular and cardiovascular disease.

Make an Appointment

To schedule a clinic appointment, please contact:

Natalie Robinson
Administrative Associate
Division of Cardiology
Ann & Robert H. Lurie Children’s Hospital of Chicago
Phone: 312.227.4399
Email: nrobinson@luriechildrens.org

For questions regarding which family members should be seen during the clinic visit or questions regarding genetic counseling and testing, please contact:

Lisa Castillo, MS, CGC
Assistant Professor, Genetic Counselor
Center for Genetic Medicine
Feinberg School of Medicine
Northwestern University


Lurie Children's has been named an accredited center of care by the Children’s ​Cardiomyopathy Foundation (CCF), a national nonprofit committed to improving the ​health outcomes and quality of life for children with cardiomyopathy.

Lurie Children's received this recognition for providing consistent high-quality cardiac​ care and specialized disease management to children with cardiomyopathy. Center ​accreditation is based on self-reported hospital data, which is evaluated on the volume of pediatric cardiomyopathy patients, variety of pediatric patient services offered, expertise in the treatment and management of cardiomyopathy in children, and affiliation with an academic research institution. For more information about CCF’s Accredited Center of Care program and selection criteria, visit the Children's Cardiomyopathy Foundation website.

Conditions We Treat

Related Specialties

Families with Cardiomyopathy Clinic