international pediatric heart failure registry iphfr iphfr 2015
DESCRIPTION
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 2015TRANSCRIPT
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
iPHF
R Recovery
Stable HF
MCS (Pedimacs, iMacs)
Listing (PHTS)
Tx (ISHLT, PHTS)
Data CollectionTime of initial entry into database. At time of 1st 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 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...
www.ishlt.org/registries
iPHFR 2015
