Registry for children with pulmonary hypertension
Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry
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 |
|---|---|
| Enrollment | 2500 (estimated) |
| Ages | 1 Day to 21 Years |
| Sex | All |
| Sponsor | New York Medical College Academic / other |
| Locations | 14 sites (Palo Alto, California and 13 other locations) |
| Trial ID | NCT02249923 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are children diagnosed with pulmonary hypertension before the age of 18.
Not a fit: Patients diagnosed with pulmonary hypertension after the age of 18 will not benefit from this study.
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 performed: Other studies focusing on pediatric pulmonary hypertension have shown promise in understanding the condition, but this registry approach is relatively novel.
Eligibility criteria
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 this trial is running
Palo Alto, California and 13 other locations
- 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)
- Columbia University Medical Center — New York, New York, United States (Recruiting)
- Maria Fareri Children's Hospital at WMC Health/Westchester Medical Center — New York, New York, United States (Not_yet_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)
- Texas Children's — Houston, Texas, United States (Not_yet_recruiting)
- Seattle Children's Hospital — Seattle, Washington, United States (Recruiting)
- University of Alberta Edmonton — Edmonton, Alberta, Canada (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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.