Inherited Cardiac Arrhythmia Program | Your Clinic Visit

The Inherited Cardiac Arrhythmia Program at Boston Children’s Hospital is committed to addressing the specific needs of you and your family through an innovative, dynamic and individualized clinical care model. We believe that successful care is created through a partnership between families and our team, working together to maximize your clinical experience and quality of life, and allowing you to feel empowered in the management of your condition. 

Before your appointment

Once we receive your referral, our clinical care coordinator will contact you to arrange for a clinic visit. If you or your family members need appointments at both Boston Children’s Hospital and Brigham and Women’s Hospital, our team will work to coordinate those appointments and testing on the same day.

Our coordinator will work with you to collect all pertinent medical information and documentation including prior testing, pathology reports and autopsy reports (if applicable). We may send you a form to sign authorizing the release of this medical information to our team. You may also receive a call from our genetic counselor to get a detailed family history before your clinic visit.

On the day of your appointment

You will arrive at the clinic and register. You may have a variety of screening tests on the day of the clinic visit, including an electrocardiogram (ECG), exercise stress test and echocardiogram. Some testing may be done before or after the clinical visit, including a 24-hour Holter monitor or cardiac MRI.

Most patients will have an ECG in the exam room. Following this, you will meet with various members of our team including physicians, nurse practitioners, a genetic counselor and a psychologist. A cardiology fellow may also join the appointment.

  • The genetic counselor will review your family history, discuss the possibility of genetic testing if appropriate, or interpret prior test results. They will provide you with information to share with your family members.
  • A physician or nurse practitioner will review your medical history, discuss the results of your tests, and may talk about treatment and future testing.
  • A psychologist is available to discuss and help you understand your diagnosis and management strategies and promote healthy coping skills.

At the end of the visit, our clinical team will sit down with you to discuss your individualized care plan and follow-up strategy. The plan will include where your ongoing care will take place. We often work closely with cardiologists and clinicians from around New England and beyond.

We will also provide you with detailed information and education about your diagnosis, including diagrams to help illustrate heart function and the specific clinical and genetic changes relevant to your condition. We allow plenty of time throughout the visit for you to ask questions.

After the appointment

We will send a letter summarizing the appointment to you and your primary physician. We know we provide a large amount of information during the clinic visit, and write the letter in a way that reviews what was discussed. If you have any questions about the summary, we are always available to further discuss any points by phone or e-mail.

Our coordinator will contact you directly to arrange for any follow up tests and appointments. If genetic testing is performed or recommended, our genetic counselor will arrange any testing and follow up, and discuss the results of these tests with you.