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Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

Sponsored by New York Medical College

About this study

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.

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 untreated, PH is often progressive and fatal. There is no cure for PH. Therapy focuses upon treatment of secondary causes if present, and reduction of the pulmonary artery pressure through medical therapy. T…

Where this study is enrolling (13)

Show all 13 locations
Who can participate

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

Only the research team can confirm whether you qualify. The intake questionnaire is the best way to find out.

Completing a questionnaire on Clinably does not enroll you in a clinical trial or confirm your eligibility. Only the research team can determine whether you qualify to participate. These results are based on the information you provide and are intended to help you start a conversation with the research team.

Trial data sourced from ClinicalTrials.gov.