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 type | Observational |
|---|---|
| Ages | 1 Day to 21 Years |
| Sex | All |
| Enrollment | 2500 (estimated) |
| Sponsor | New York Medical College Academic / other |
| Locations | 14 sites (Palo Alto, California and 13 other locations) |
| Status | Recruiting |
| Started | October 2014 |
| Main results expected | December 2030 |
| Study ends | December 2031 |
| Registry record updated | March 13, 2025 |
| Trial ID | NCT02249923 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
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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
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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
- Principal investigator: Steven H Abman, MD — Children's Hospital Colorado
- Study coordinator: Erika B Rosenzweig, MD
- Email: Erika.BermanRosenzweig@wmchealth.org
- Phone: 914-493-6160
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Understanding how low-load leg exercises affect muscle and blood flow in PAH patients
This substudy tests whether a gentle leg exercise program can change blood flow and oxygen use in the calf muscles of adults with pulmonary arterial hypertension.
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This study tests whether using nasal liquid oxygen during a 6-minute walk test changes how far patients with PAH or CTEPH can walk compared to breathing room air.
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This study tests whether walking with liquid oxygen at about 4 L/min helps or hinders distance walked compared with walking on room air in adults with PAH or CTEPH living in Switzerland.
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Sotatercept in Japanese children with pulmonary arterial hypertension
This study tests whether sotatercept is safe and well tolerated in Japanese children with PAH when added to standard PAH treatment.
-
DIAG723 in Adults With HHT
A first-in-human study tests DIAG723 versus placebo in adults with hereditary hemorrhagic telangiectasia to see if it is safe and possibly helpful.
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Researchers are testing a new PET/CT tracer, 18F-FAPI-74, to see if it can reveal early fibrotic changes in people with heart and lung diseases who are at risk for tissue scarring.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.