Pulmonary Hypertension Association Registry

Description

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.

Conditions

Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension

Study Overview

Study Details

Study overview

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.

Pulmonary Hypertension Association Registry

Pulmonary Hypertension Association Registry

Condition
Pulmonary Arterial Hypertension
Intervention / Treatment

-

Contacts and Locations

Phoenix

Arizona Pulmonary Specialists, Ltd., Phoenix, Arizona, United States, 85012

Sacramento

UC Davis Health, Sacramento, California, United States, 95816

San Francisco

UCSF Medical Center, San Francisco, California, United States, 94143

San Francisco

UCSF Benioff Children's Hospital, San Francisco, California, United States, 94158

Santa Barbara

Cottage Health System - Santa Barbara Pulmonary Associates, Santa Barbara, California, United States, 93105

Stanford

Stanford University, Stanford, California, United States, 94305

Aurora

Children's Hospital Colorado, Aurora, Colorado, United States, 80045

Aurora

UC Health - Anschutz Medical Campus, Aurora, Colorado, United States, 80045

Farmington

University of Connecticut Health, Farmington, Connecticut, United States, 06030

Jacksonville

Mayo Clinic Florida, Jacksonville, Florida, United States, 32224

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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
  • * 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

Ages Eligible for Study

0 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Pulmonary Hypertension Association, Inc.,

Study Record Dates

2025-10