Pulmonary Hypertension Association Registry

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.

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Key information

Conditions

Pulmonary Arterial Hypertension Cardiovascular Diseases Chronic Thromboembolic Pulmonary Hypertension Hypertension Hypertension, Pulmonary Lung Diseases Pulmonary Hypertension Respiratory Tract Diseases Vascular Diseases

Age range

0 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Arizona Pulmonary Specialists, Ltd., Phoenix, Arizona, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics

Time frame: 10 years

PAH guideline-recommended diagnostics assessed include chest radiography, echocardiogram, ventilation-perfusion (V/Q) scan, pulmonary function tests, overnight oximetry, and right heart catheterization and identified as either "completed" or "not completed"
Impact of clinical predictors of disease worsening on patient outcomes

Time frame: 10 years

Prognostic importance of disease worsening predictors including changes in World Health Organization (WHO) / New York Heart Association (NYHA) functional class (I-IV), 6-minute walk distance in meters, and brain natriuretic peptide (BNP) in pg/mL on survival.
Survival

Time frame: 10 years

Study contacts

Contact information is provided by the study sponsor or research team.

Charles D Burger, MD

CONTACT

[email protected]

904-953-2000 ext. 904-953-2000

Elizabeth Joseloff, PhD

CONTACT

[email protected]

301-565-3004 ext. 759

Sponsors and collaborators

Lead sponsor

Pulmonary Hypertension Association, Inc.

Other

Registry information

Acronym: PHAR

Important dates

Study start: 2015
Primary completion: 2025
Study completion: 2025
First posted: Aug 28, 2019
Registry last updated: Nov 14, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting