Registries - Pediatric Heart Failure Registry



INTERNATIONAL PEDIATRIC HEART FAILURE REGISTRY (iPHFR)


The ISHLT International Pediatric Heart Failure Registry (iPHFR) is an international registry intended to enroll and follow pediatric patients with heart failure in the setting of either congenital or acquired heart disease in all countries and hospitals that wish to participate. The iPHFR will embrace the whole international pediatric heart failure community, not all of whom are involved in transplantation.

The primary goal is to collect and analyze clinically relevant data on pediatric heart failure patients in order to better understand the natural history and response to current treatment regimens.

The iPHFR seeks to partner 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 Transplant registry in that outcomes from the time of listing (not just from the time of transplant) and risk factors will be available for analysis in this important subgroup of patients.

ISHLT has awarded a three year contract to the United Network for Organ Sharing (UNOS) to serve as the Data Coordinating and Analysis Center. UNOS is the contractor for the United States Government’s Organ Procurement and Transplantation Network (OPTN).


WHY PARTICIPATE IN iPHFR?

Benefits to Centers
  • Statistical summaries of hospital experience
  • Participate in heart failure research
  • Generate volume and trend data to facilitate short and long term manpower and financial planning

Benefits to ISHLT
  • Own and direct an international high quality pediatric heart failure registry
  • Complement the ISHLT transplant registry
  • Provide Statistical Reports and Research Analyses to ISHLT Researchers

Benefits to pediatric heart failure community
  • Improved outcomes
  • Facilitate accelerated evaluation of new therapies (drugs and devices)
  • Development of international standards for pediatric heart failure


iPHFR Information: PowerPoint presentation about iPHFR available to download

ISHLT Pediatric Heart Failure Guidelines MONOGRAPH



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