Registries - Pediatric Heart Failure Registry



INTERNATIONAL PEDIATRIC HEART FAILURE REGISTRY (iPHFR)


Objective of proposed database: To collect and analyze clinically relevant data on pediatric heart failure patients in order to better understand the natural history and response to current disease treatment regimes.

The ISHLT International Pediatric Heart Failure Registry (iPHFR) will capture both North American and international data within the framework of the main ISHLT Tx registry for both congenital and acquired heart failure. It seeks to ally with and draw on the strengths of the Transplant registry to achieve sustainability and have robust reporting and statistical methodology. Registry reports will be produced annually and published in the same way the current ISHLT registry data is reported. This registry will enhance the main ISHLT registry as those patients with heart failure who progress to require transplant will already have had their demographic and diagnostic data entered and additionally the date of listing will be captured. This will also address an important recognized limitation of the Tx registry in that outcomes from the time of transplant listing (not just from the time of transplant) and risk factors will be able to be analyzed in this important subgroup of patients. The iPHFR will also further the aims of the ISHLT by embracing the international pediatric heart failure community, not all of whom are engaged in transplantation.

Patient population: Children < 18 years of age with either congenital or acquired heart disease presenting with heart failure

Inclusion criteria:

  • Children < 18 years of age

  • With either 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 commenced


Exclusion criteria:

  • High-flow/shunt lesions as underlying reason for heart failure (e.g. VSD, AVSD, systemic or CNS vascular malformations, catecholamine producing tumours, etc.)

  • Children with correctable lesions (e.g. critical AS, critical PS, etc.)

  • On mechanical circulatory support at time of registration (will be in iMACS registry)


Time 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 follow-up (hospitalization or death)


Steering Committee

Enrollment Documents
If your center requires a Data Use Agreement, for questions or to submit, please email ishlthelp@unos.org.

IRB Templates
Data Forms
iPHFR Information: Powerpoint presentation about iPHFR available to download.

Help/Support
For iPHFR enrollment or general questions: ishlthelp@unos.org


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