Registry following children with pulmonary hypertension over time
Collects information over time from children with pulmonary hypertension to study their disease.
Plain-language title generated from the registry record
Registry title: Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry
Key facts
- Where
- Edmonton, CanadaSee the site
Where in Canada
- University of Alberta EdmontonEdmonton, CanadaTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- New York Medical College
- Trial code
- NCT02249923
- Record updated
- 13 March 2025
- Original description
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.Read full original descriptionShow less
Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry
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.
Inclusion: 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: Diagnosed with pulmonary hypertension after age 18; Refusal to sign informed consent.