Recruiting

Pulmonary Hypertension Association Registry

ClinicalTrials.gov IDNCT04071327

PhaseNot Applicable

Enrollment3000

SponsorPulmonary Hypertension Association, Inc.

Age0 Years

SexALL

I'm interested View official listing

Conditions studied

Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension

About this study

The PHA Registry (PHAR) is a national study about people who have pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). PHAR collects information from people with PAH and CTEPH who are cared for in participating PHA-accredited Pulmonary Hypertension Care Centers throughout the U.S. PHAR will determine how people with PAH and CTEPH are evaluated, tested, and treated, and will observe how well these participants do. The goal is to see if people with PH are treated according to recommended guidelines, and to see if there are certain factors that can lead to better or worse outcomes. PHAR will include information about people with PAH and CTEPH in the U.S. who are seen at participating PHA-accredited PH Care Centers. PHAR contains data about patient care and outcomes. Specifically, data in the PHAR includes information on diagnosis; clinical status; socioeconomic status; diagnosis test results; body size; treatment information; interest in participating in clinical trials; family health and social history; and information about smoking, alcohol, or drug use. Participants are followed over time, and provide updates such as changes in therapy, how often participants need to go to the hospital, and survival. Such information may help healthcare providers provide better care.

Primary outcomes

Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics (10 years)
Impact of clinical predictors of disease worsening on patient outcomes (10 years)
Survival (10 years)

Eligibility information

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

Study locations

Arizona Pulmonary Specialists, Ltd., Phoenix, Arizona 85012 United States
UC Davis Health, Sacramento, California 95816 United States
UCSF Medical Center, San Francisco, California 94143 United States
UCSF Benioff Children's Hospital, San Francisco, California 94158 United States
Cottage Health System - Santa Barbara Pulmonary Associates, Santa Barbara, California 93105 United States
Stanford University, Stanford, California 94305 United States
Children's Hospital Colorado, Aurora, Colorado 80045 United States
UC Health - Anschutz Medical Campus, Aurora, Colorado 80045 United States
University of Connecticut Health, Farmington, Connecticut 06030 United States
Mayo Clinic Florida, Jacksonville, Florida 32224 United States

Showing 10 of 52 reported sites. See the official listing for all locations.

Before you participate: Varda Clinical is an independent discovery tool, not the study sponsor or a medical provider. Eligibility can only be determined by the official study team. Discuss potential risks and benefits with a qualified healthcare professional.

Source: ClinicalTrials.gov. Record last refreshed by Varda Clinical: 2026-09-27.