PPHNet Informatics Registry for Pediatric Pulmonary Hypertension
This study is an observational registry, meaning researchers are collecting information about children with pulmonary hypertension (high blood pressure in the lungs) to better understand the disease. They believe childhood pulmonary hypertension is different from adult forms and hope to learn more about its causes, how it progresses, and what treatments work best. You may be able to join if you are between 1 day and 21 years old, and your pulmonary hypertension started before you were 18. The main goal is to track how long it takes for a patient's condition to worsen, measured over 12 months. This study is currently unclear on its recruitment status and is not testing any specific interventions or drugs.
- Study design
- This is an observational study aiming to enroll 2500 participants. It is not testing a specific treatment, but rather collecting information.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- The primary endpoint, time to clinical worsening, is measured at 12 months.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry
At a glance
Conditions
Where it's being run
14 sites across 12 statesStudy leadership
- Steven H Abman, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital Colorado
- David D Ivy, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital Colorado
- Kenneth D Mandl, MD · PRINCIPAL_INVESTIGATOR · Boston Children's Hospital, Harvard School of Medicine
- Roberta Keller, MD · PRINCIPAL_INVESTIGATOR · University California San Francisco
- Rachel Hopper, MD · PRINCIPAL_INVESTIGATOR · Stanford University
- Angela Bates, MD · PRINCIPAL_INVESTIGATOR · University of Alberta Edmonton
- Catherine Avitabile, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital of Philadelphia
- Mary Mullen, MD · PRINCIPAL_INVESTIGATOR · Boston Children's Hospital
- Eric Austin, MD · PRINCIPAL_INVESTIGATOR · Vanderbilt University Medical Center
- Marc Natter, MD · PRINCIPAL_INVESTIGATOR · Boston Children's Hospital
- Usha Krishnan, MD · PRINCIPAL_INVESTIGATOR · Columbia University
- Lynn A Sleeper, ScD · PRINCIPAL_INVESTIGATOR · Boston Children's Hospital
- Erika Rosenzweig, MD · PRINCIPAL_INVESTIGATOR · Maria Fareri Children's Hospital at WMC Health/Westchester Medical Center
- Jenny Schramm, MD · PRINCIPAL_INVESTIGATOR · Johns Hopkins University
- Lewis Romer, MD · PRINCIPAL_INVESTIGATOR · Johns Hopkins University
- Grace Freire, MD · PRINCIPAL_INVESTIGATOR · Johns Hopkins All Children's Heart Institute
- Stephanie Handler, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital Wisconsin
- Nidhy Varghese, MD · PRINCIPAL_INVESTIGATOR · Baylor College of Medicine
- Russel Hirsch, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital Medical Center, Cincinnati
- Delphine Yung, MD · PRINCIPAL_INVESTIGATOR · Seattle Children's Hospital
Who to contact
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Do you actually qualify for this trial?
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Inclusion
Exclusion
What this trial measures
- Time to clinical worsening12 months
Time to clinical worsening for death, cardiac transplant, atrial septostomy, or Potts shunt.