Clinical trial Recruiting at 12 sites Observational Ages 1 Day to 21

Registry for children with pulmonary hypertension

Official title: Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

Run by New York Medical College · NCT02249923 · Data updated 2026-11-12

This study is collecting information about children with pulmonary hypertension to better understand the condition and improve treatment options for them.

Quick facts

Study typeObservational
Ages1 Day to 21 Years
SexAll
Enrollment2500 (estimated)
SponsorNew York Medical College
Academic / other
Locations14 sites (Palo Alto, California and 13 other locations)
StatusRecruiting
StartedOctober 2014
Main results expectedDecember 2030
Study endsDecember 2031
Registry record updatedMarch 13, 2025
Trial IDNCT02249923 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this study are children diagnosed with pulmonary hypertension before the age of 18.

Probably not a fit

Patients diagnosed with pulmonary hypertension after the age of 18 will not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to gather extensive information about children diagnosed with pulmonary hypertension to enhance understanding of the disease and improve treatment options. Researchers will collect data on the incidence, natural history, and various causes of pediatric pulmonary hypertension, which is believed to differ significantly from adult cases. The study will also document current diagnostic and therapeutic approaches used by investigators. By analyzing this data over time, the goal is to identify patterns and outcomes that can inform better clinical practices.

Why it matters

Potential benefit: If successful, this study could lead to improved diagnosis and treatment strategies for children suffering from pulmonary hypertension.

How similar studies have gone: Other studies focusing on pediatric pulmonary hypertension have shown promise in understanding the condition, but this registry approach is relatively novel.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

* The subject's age of onset of pulmonary hypertension must be prior to age 18 years
* The person providing consent must be able to read either Spanish or English.
* The subject (and/or parent/legal guardian) must be able to provide informed consent

Exclusion Criteria:

* Diagnosed with pulmonary hypertension after age 18
* Refusal to sign informed consent

Where it's running

  • Stanford University Medical Center
    Palo Alto, California, United States
    Recruiting
  • University California San Francisco
    San Francisco, California, United States
    Recruiting
  • Children's Hospital Colorado
    Aurora, Colorado, United States
    Recruiting
  • Johns Hopkins All Children's Heart Institute
    St. Petersburg, Florida, United States
    Recruiting
  • Johns Hopkins Children's Center
    Baltimore, Maryland, United States
    Recruiting
  • Boston Children's Hospital
    Boston, Massachusetts, United States
    Recruiting
Show 8 more locations
  • Columbia University Medical Center
    New York, New York, United States
    Recruiting
  • Cincinnati Children's Hospital Medical Center
    Cincinnati, Ohio, United States
    Recruiting
  • Children's Hospital of Philadelphia
    Philadelphia, Pennsylvania, United States
    Recruiting
  • Vanderbilt University Medical Center
    Nashville, Tennessee, United States
    Recruiting
  • Seattle Children's Hospital
    Seattle, Washington, United States
    Recruiting
  • University of Alberta Edmonton
    Edmonton, Alberta, Canada
    Recruiting
  • Maria Fareri Children's Hospital at WMC Health/Westchester Medical Center
    New York, New York, United States
    Not yet recruiting
  • Texas Children's
    Houston, Texas, United States
    Not yet recruiting

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.