International Pediatric Heart Failure Registry iPHFR iPHFR 2015

ISHLT Pediatric Heart Failure Guidelines iPHFR 2015

Why a Registry? Following the completion of the Pediatric Heart Failure Guidelines, it was recognized that to move the Pediatric Heart Failure field forward an international registry was required. iPHFR 2015

Why a Registry?  Heart failure management in adults is improving  There is a paucity of pediatric data  pediatric management is thus derived from adult data  There is no existing pediatric heart failure registry  Furthers the ISHLT Aim to generate evidence-based pediatric heart failure treatment guidelines  Provides a vehicle to reach the wider heart failure community iPHFR 2015

Objective To collect and analyze clinically relevant data on pediatric heart failure patients to better understand the natural history as well as response to current and future disease treatment regimes. iPHFR 2015

Prospective Patient Enrollment  Patient population: < 18 years of age with either congenital or acquired heart disease presenting with heart failure  Inclusion criteria:  < 18 years of age  With congenital or acquired heart disease  Presenting with symptomatic cardiac failure (NYHA or Ross classification >1) not amenable to surgical correction  Asymptomatic patients with sufficient echocardiographic dysfunction for medication to be initiated  Exclusion criteria:  High-flow/shunt lesions (e.g. VSD)  Children with correctable lesions (eg. critical AS/PS)  On MCS at time of registration (will be in iMACS registry)

iPHFR 2015 Web-based Data Entry

iPHFR 2015 iPHFR Patient Destinations iPHFR Recovery Stable HF MCS (Pedimacs, iMacs) Listing (PHTS) Tx (ISHLT, PHTS)

Data Collection Time of initial entry into database.  At time of 1 st diagnosis of heart failure (inpatient or outpatient) Are follow-up data to be collected?  Annual follow-up  Event initiated (hospitalization or death) iPHFR 2015

iPHFR Invitation

Steering Committee  Anne Dipchand (Chair)  Richard Kirk  Chris Almond  Christina VanderPluym  Angela Lorts  Yuk Law  Elfi Pahl  Estela Azeka  Robert Gajarski  Scott Auerbach  Warren Zuckerman  Leah Edwards (UNOS) iPHFR 2015

Institutional enrollment information available at... iPHFR 2015

Questions? iPHFR 2015