Public Use Datasets

Available Public Use Datasets

The PHN offers access to the deidentified datasets for several completed studies. You can access the study dataset information and data use policies for each available study below. For questions about the PHN Public Use Datasets, please contact the PHN Data Coordinating Center.

Collaborative Learning

(Observational Study)

The Collaborative Learning study compared how well babies did after surgery at heart centers where babies were removed from the ventilator early versus at sites where babies were not taken off the ventilators early.

Echo Z-Score & Normal Electrocardiogram

(Observational Study)

The objectives of this study were to establish a Z-score database for common echo measurements based on a uniformly defined and racially diverse population of normal children from multiple centers over a wide geographic area and to collect electrocardiograms (ECG) from the same population for future establishment of ECG reference values.


(Observational Study)

This study was done to survey the health status of patients after Fontan surgery and to better understand how tests performed routinely to evaluate heart function relate to overall health status in patients after Fontan surgery.

Infant Single Ventricle (ISV)

(Enalapril vs Placebo Trial)

This study was done to see if giving a medication called Enalapril (an ACE inhibitor) would improve a baby's growth and heart function in the first year of life.

Kawasaki Disease

(Methylprednisolone vs Placebo Trial)

This study evaluated pulse steroid therapy in kawasaki disease (KD). The purpose of this trial was to see if adding steroids (methylprednisone) to the standard treatment would improve coronary artery outcomes.


(Atenolol vs Losartan Trial)

This study was done to compare two drugs (Atenolol and Losartan) to see if one is better than the other at slowing the speed of aortic enlargement. The study also compared the kinds of side effects that can occur when taking either of these medicines.

Single Ventricle Reconstruction (SVR)

(RV-PA Shunt vs MBT Shunt Trial)

The Single Ventricle Reconstruction (SVR) Trial was done to evaluate two commonly placed shunts to see which one would improve how patients do following the Norwood procedure.

Single Ventricle Reconstruction Follow-Up 2 (SVR II)

(Observational Study)

In this first follow-up to the SVR Trial, we wanted to learn if these same children (2-6 years of age) do better with one of the two shunts (RV-to-PA or MBTS) in the years after surgery. We also explored how other medical and surgical factors affect children's health and how they develop.

Ventricular Volume Variability

(Observational Study)

This study was done to help us understand why there might be errors in measurements and the true change in heart function values over time.