Please Note: The IPHF Registry is no longer enrolling new centers or accepting new data.
About the Registry
The IPHF Registry will provide the information to enable all children with heart failure to receive the best available treatments and direct research to improve future outcomes.
To reliably capture diagnostic and management data on every child with new-onset heart failure worldwide. To analyze and disseminate the data acquired. To work collaboratively with other registries including ISHLT Transplant, PediMacs and PHTS. To utilize the information gathered to inform best current practice and future management strategies.
REGISTRY DATA ENTRY FOR ENROLLED CENTERS
The IPHF Registry is no longer enrolling new centers or accepting new data. For Transplant Registry questions or problems, please contact firstname.lastname@example.org.
WHAT IS THE IPHF REGISTRY?
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
Benefits to ISHLT
- 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 pediatric heart failure community
- 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
- Improved outcomes
- Facilitate accelerated evaluation of new therapies (drugs and devices)
- Development of international standards for pediatric heart failure
- Children < 18 years of age with either congenital or acquired heart disease presenting with heart failure
- 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 warranting the initiation of medication
- High-flow/shunt lesions as underlying reason for heart failure (e.g. VSD, AVSD, systemic or CNS vascular malformations, catecholamine producing tumors, 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 THE DATABASE
- At time of 1st presentation for heart failure (inpatient or outpatient) to the enrolling center. May have had a diagnosis of heart failure at an outside institution.
WHAT FOLLOW UP DATA IS TO BE COLLECTED?
- Annual follow-up
- Event initiated follow-up (hospitalization or death)