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Research

Photo for TOF-LIFE

TOF-LIFE

Official Title

Tetralogy of Fallot for Life

Status

Ongoing

Overview

Tetralogy of Fallot (TOF) is the most common cyanotic congenital heart defect with a global incidence rate 38,000 patients annually. TOF is a life-long condition and requires long-term follow-up and often multiple cardiac re-interventions. Despite the improved early survival with surgical repair, evidence suggest that certain repair techniques are associated with long-term complications of right heart failure and sudden cardiac death.  The TOF LIFE study will increase the understanding of current TOF surgical practices globally, the impact of repair technique on right heart function, and the resultant life-long morbidity and mortality. TOF LIFE is a prospective, international, observational inception cohort study that will be recruiting participants from large pediatric cardiac centers globally. 

Study Design

International multi-centre inception cohort study

Primary Endpoint

Primary outcome is right ventricular morphology and physiology at 2 years post-repair as measured by echocardiography.

Number of Patients

3000

Number of Sites

19

Number of Countries

10

Study Period

2015-2019

Principal Investigator

Richard Whitlock, Glen Van Arsdell

Program Manager

Shirley Pettit

Research Coordinator

Sara Hussain (Research Fellow), Ingrid Copland

Collaborators

International Congenital Cardiac Study Group