ICD Study

We are pleased to announce that we have received funding from Medtronic Inc., Boston Scientific Corp.; and St. Jude Medical Inc. to continue our research efforts in understanding the predictors of implantable cardioverter defibrillator (ICD) firing in people with Arrhythmogenic Right Ventricular Dysplasia (ARVD).  We are trying to understand what activities might trigger an arrhythmia that causes an ICD to fire. In addition, we are interested in learning what it is like for patients with ARVD to live with an ICD.  Please review the study information below and consider joining this very important study.

Predictors of ICD Firing in ARVD Patients

Who: People who have had an ICD implanted for ARVD

Why: 

  • To help us learn more about what causes arrhythmias that need treatment with an ICD shock. 
  • To help us better understand how having ARVD, an ICD, and ICD shocks affects your life

What:

  • At enrollment you will be asked to answer some background questions about your diet and exercise. 
  • Each time your ICD is interrogated, you will be asked to answer questions about your symptoms, medications, and any recent heart-related  testing.  
  • If your ICD delivers a shock, you will be asked to answer additional, questions about your activities in the days before the shock.
  • An optional part of the study asks questions about how having ARVD and an ICD affects your life. We also will ask about what activities you are able to do day to day and about your feelings.  These questions will be added to your regular study questionnaires.

How:  All questionnaires can now be completed online via our website www.arvd.com.  We can also send paper copies to you or we can fill them out with you on the phone.  We will work with you to request copies of your ICD interrogations from your local doctor.

How to Join: Contact the ARVD Office at 443-287-5985 or email study coordinator, Cindy James, at cjames7@jhmi.edu.

Principal Investigator: Dr. Hugh Calkins, MD
Professor of Medicine and Pediatrics,
Director of the Arrhythmia Service and Clinical Electrophysiology Laboratory
Johns Hopkins Hospital, Carnegie 592, 600 N. Wolfe St.
Baltimore, Maryland 21287-0409
Phone: 410-955-7405
E-mail: hcalkins@jhmi.edu

Links to Online Questionnaires:

Form 1: ICD Baseline Variables

Form 2: ICD Firing Questionnaire

Form 3: Routine ICD Follow-Up Questionnaire

Psychological Aspects of Living with an ICD Questionnaire