Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry
New York Medical College
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.
Description
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, human immunodeficiency virus (HIV), and use of anorexigens. Left untreat…
Eligibility
- Age range
- 0–21 years
- Sex
- All
- Healthy volunteers
- No
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
Locations (14)
- Stanford University Medical CenterPalo Alto, California
- University California San FranciscoSan Francisco, California
- Children's Hospital ColoradoAurora, Colorado
- Johns Hopkins All Children's Heart InstituteSt. Petersburg, Florida
- Johns Hopkins Children's CenterBaltimore, Maryland
- Boston Children's HospitalBoston, Massachusetts