Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry
PPHNet
3 other identifiers
observational
2,500
2 countries
14
Brief Summary
Patients are being asked to be in this research study because medical researchers hope that by gathering information about a large number of children with pulmonary hypertension over time, their understanding of the disease process will increase and lead to better treatment. Investigators believe that pulmonary hypertension in children is different than pulmonary hypertension in adults and this study will help us understand those differences.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Oct 2014
Longer than P75 for all trials
14 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
September 10, 2014
CompletedFirst Posted
Study publicly available on registry
September 26, 2014
CompletedStudy Start
First participant enrolled
October 1, 2014
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 1, 2030
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 1, 2031
March 13, 2025
February 1, 2025
16.2 years
September 10, 2014
March 10, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Time to clinical worsening
Time to clinical worsening for death, cardiac transplant, atrial septostomy, or Potts shunt.
12 months
Secondary Outcomes (2)
Escalation of Pulmonary Hypertension Therapy
36 months
Right Heart Failure
36 months
Study Arms (1)
Pulmonary Arterial Hypertension
Eligibility Criteria
Pulmonary Hypertension (PH) is a syndrome characterized by vasoconstriction and abnormal growth and function of endothelial and smooth muscle cells and other components within the pulmonary vessels, which leads to elevation of the pulmonary artery pressure. PH may be idiopathic (primary) without any known cause. Some cases of PH are familial. PH may also be secondary to a specific disease process such as portal hypertension, congenital heart disease, chronic lung disease, thromboembolic disease, connective tissue disease, HIV, and use of anorexigens.
You may qualify if:
- 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
You may not qualify if:
- Diagnosed with pulmonary hypertension after age 18
- Refusal to sign informed consent
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- New York Medical Collegelead
- National Heart, Lung, and Blood Institute (NHLBI)collaborator
- Janssen Pharmaceuticalscollaborator
Study Sites (14)
Stanford University Medical Center
Palo Alto, California, United States
University California San Francisco
San Francisco, California, United States
Children's Hospital Colorado
Aurora, Colorado, 80045, United States
Johns Hopkins All Children's Heart Institute
St. Petersburg, Florida, United States
Johns Hopkins Children's Center
Baltimore, Maryland, United States
Boston Children's Hospital
Boston, Massachusetts, United States
Columbia University Medical Center
New York, New York, United States
Maria Fareri Children's Hospital at WMC Health/Westchester Medical Center
New York, New York, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
Vanderbilt University Medical Center
Nashville, Tennessee, United States
Texas Children's
Houston, Texas, United States
Seattle Children's Hospital
Seattle, Washington, United States
University of Alberta Edmonton
Edmonton, Alberta, Canada
Related Publications (1)
Geva A, Gronsbell JL, Cai T, Cai T, Murphy SN, Lyons JC, Heinz MM, Natter MD, Patibandla N, Bickel J, Mullen MP, Mandl KD; Pediatric Pulmonary Hypertension Network and National Heart, Lung, and Blood Institute Pediatric Pulmonary Vascular Disease Outcomes Bioinformatics Clinical Coordinating Center Investigators. A Computable Phenotype Improves Cohort Ascertainment in a Pediatric Pulmonary Hypertension Registry. J Pediatr. 2017 Sep;188:224-231.e5. doi: 10.1016/j.jpeds.2017.05.037. Epub 2017 Jun 16.
PMID: 28625502DERIVED
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Steven H Abman, MD
Children's Hospital Colorado
- PRINCIPAL INVESTIGATOR
David D Ivy, MD
Children's Hospital Colorado
- PRINCIPAL INVESTIGATOR
Kenneth D Mandl, MD
Boston Children's Hospital, Harvard School of Medicine
- PRINCIPAL INVESTIGATOR
Roberta Keller, MD
University California San Francisco
- PRINCIPAL INVESTIGATOR
Rachel Hopper, MD
Stanford University
- PRINCIPAL INVESTIGATOR
Angela Bates, MD
University of Alberta Edmonton
- PRINCIPAL INVESTIGATOR
Catherine Avitabile, MD
Children's Hospital of Philadelphia
- PRINCIPAL INVESTIGATOR
Mary Mullen, MD
Boston Children's Hospital
- PRINCIPAL INVESTIGATOR
Eric Austin, MD
Vanderbilt University Medical Center
- PRINCIPAL INVESTIGATOR
Marc Natter, MD
Boston Children's Hospital
- PRINCIPAL INVESTIGATOR
Usha Krishnan, MD
Columbia University
- PRINCIPAL INVESTIGATOR
Lynn A Sleeper, ScD
Boston Children's Hospital
- PRINCIPAL INVESTIGATOR
Erika Rosenzweig, MD
Maria Fareri Children's Hospital at WMC Health/Westchester Medical Center
- PRINCIPAL INVESTIGATOR
Jenny Schramm, MD
Johns Hopkins University
- PRINCIPAL INVESTIGATOR
Lewis Romer, MD
Johns Hopkins University
- PRINCIPAL INVESTIGATOR
Grace Freire, MD
Johns Hopkins All Children's Heart Institute
- PRINCIPAL INVESTIGATOR
Stephanie Handler, MD
Children's Hospital Wisconsin
- PRINCIPAL INVESTIGATOR
Nidhy Varghese, MD
Baylor College of Medicine
- PRINCIPAL INVESTIGATOR
Russel Hirsch, MD
Children's Hospital Medical Center, Cincinnati
- PRINCIPAL INVESTIGATOR
Delphine Yung, MD
Seattle Children's Hospital
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 5 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
September 10, 2014
First Posted
September 26, 2014
Study Start
October 1, 2014
Primary Completion (Estimated)
December 1, 2030
Study Completion (Estimated)
December 1, 2031
Last Updated
March 13, 2025
Record last verified: 2025-02
Data Sharing
- IPD Sharing
- Will not share