Implantable Cardioverter Defibrillator Therapy in Catecholaminergic Polymorphic Ventricular Tachycardia

Overview

About this study

The purpose of this study is to compare the rate of arrhythmia-induced events between paediatric Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) patients with and without implantable cardioverter defibrillator (ICDs), and to determine the quality of life and psychosocial functioning of paediatric CPVT patients with and without ICDs.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • A paediatric patient who has received a diagnosis of CPVT, and has experienced a cardiac arrest/appropriate ICD shock:
  • A diagnosis of CPVT is typically made in the presence of a structurally normal heart, normal QTc interval on resting ECG, and a clinical phenotype of exertional or emotional syncope or cardiac arrest and at least one of the following:
    • Unexplained exercise or catecholamine-induced bidirectional VT or polymorphic ventricular premature beats or VT;
    • Identification of a heterozygous pathogenic/likely pathogenic variant or biallelic pathogenic/likely pathogenic variants in a gene known to be associated with CPVT.
  • Aged 5-19 years old inclusive at time of consent.
  • A patient that is already enrolled in the Paediatric CPVT Registry.
  • Fluent in English (all questionnaires are written in English), or recruited at a site where the questionnaires are available in an appropriate language.

Exclusion Criteria:

  • Parents or patients unable/unwilling to provide informed consent or assent, respectively.
  • Significant co-morbid condition not directly related to a complication of CPVT.
  • Individuals (including parents) who are not fluent in written/spoken English.
  • Intellectual disability or neurodevelopmental disabilities that would interfere with the patient’s ability to assent and complete questionnaires.
  • Non-CPVT related significant life events within the preceding 6 months (e.g., serious illness [personal or family], death of family or friends, divorce/separation).

Eligibility last updated 6/27/22. Questions regarding updates should be directed to the study team contact.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Michael Ackerman, M.D., Ph.D.

Contact us for the latest status

Contact information:

Carla Haglund-Turnquist

(507) 284-8900

HaglundTurnquist.Carla@mayo.edu

More information

Publications

Publications are currently not available