Pulmonary Hypertension Association Registry

Launched by PULMONARY HYPERTENSION ASSOCIATION, INC. · Aug 24, 2019

Keywords

ClinConnect Summary

The Pulmonary Hypertension Association Registry (PHAR) is a national study aimed at understanding how people with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are diagnosed and treated. The study collects important information from patients cared for at special Pulmonary Hypertension Care Centers in the U.S. By looking at this data, researchers hope to see how well patients are doing, if they are receiving recommended treatments, and what factors might influence their health outcomes. This information can help doctors provide better care for patients with these conditions.

Anyone with PAH or CTEPH, regardless of age, can be eligible to participate, as long as they give their consent and are seen at a participating care center within six months of their first visit. Participants will provide updates about their health over time, including any changes in treatment and hospital visits. This study not only helps improve care for current patients but also contributes to future treatments and guidelines for managing pulmonary hypertension.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • All age groups
• • Written informed consent
• • Pulmonary arterial hypertension (PAH), chronic thromboembolic pulmonary hypertension (CTEPH), or pediatric PH due to developmental lung disease
• • Within 6 months of first outpatient visit at a PH Care Center
• Exclusion Criteria:
• • Diagnosis of WSPH Group 2 pulmonary hypertension
• • Diagnosis of WSPH Group 3 pulmonary hypertension, except PH due to developmental lung disease
• • Diagnosis of WSPH Group 5 pulmonary hypertension