Pulmonary Hypertension Association Registry
- Conditions
- Pulmonary HypertensionPulmonary Arterial HypertensionChronic Thromboembolic Pulmonary Hypertension
- Registration Number
- NCT04071327
- Lead Sponsor
- Pulmonary Hypertension Association, Inc.
- Brief Summary
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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 3000
- 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
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Survival 10 years Impact of clinical predictors of disease worsening on patient outcomes 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.
Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics 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"
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (52)
University of Iowa Hospitals & Clinic
🇺🇸Iowa City, Iowa, United States
Sentara Heart Hospital
🇺🇸Norfolk, Virginia, United States
Froedtert & Medical College of Wisconsin
🇺🇸Milwaukee, Wisconsin, United States
Cottage Health System - Santa Barbara Pulmonary Associates
🇺🇸Santa Barbara, California, United States
Mayo Clinic Florida
🇺🇸Jacksonville, Florida, United States
LSU Healthcare Network Clinic
🇺🇸New Orleans, Louisiana, United States
UT Southwestern Medical Center
🇺🇸Dallas, Texas, United States
KU Medical Center
🇺🇸Kansas City, Kansas, United States
VCU Medical Center
🇺🇸Richmond, Virginia, United States
Ochsner Medical Center
🇺🇸Jefferson, Louisiana, United States
Kentuckiana Pulmonary Associates
🇺🇸Louisville, Kentucky, United States
Aurora St. Luke's Medical Center
🇺🇸Milwaukee, Wisconsin, United States
Baylor Scott & White
🇺🇸Plano, Texas, United States
UNC Chapel Hill
🇺🇸Chapel Hill, North Carolina, United States
UC Davis Health
🇺🇸Sacramento, California, United States
Stanford University
🇺🇸Stanford, California, United States
Children's Hospital Colorado
🇺🇸Aurora, Colorado, United States
UC Health - Anschutz Medical Campus
🇺🇸Aurora, Colorado, United States
Mayo Clinic
🇺🇸Rochester, Minnesota, United States
Weill Cornell Medical Center
🇺🇸New York, New York, United States
Columbia University Medical Center/NewYork-Presbyterian Hospital
🇺🇸New York, New York, United States
University of Rochester Medical Center
🇺🇸Rochester, New York, United States
AnMed Health
🇺🇸Anderson, South Carolina, United States
Ft. Sanders Regional Medical Center
🇺🇸Knoxville, Tennessee, United States
Inova Fairfax Hospital
🇺🇸Falls Church, Virginia, United States
University of Wisconsin Hospital and Clinics
🇺🇸Madison, Wisconsin, United States
Northside Hospital
🇺🇸Atlanta, Georgia, United States
Indiana University Health
🇺🇸Indianapolis, Indiana, United States
University of MD Medical Group, PA
🇺🇸Baltimore, Maryland, United States
Johns Hopkins University
🇺🇸Baltimore, Maryland, United States
University of Washington
🇺🇸Seattle, Washington, United States
University of Pennsylvania
🇺🇸Philadelphia, Pennsylvania, United States
Texas Children's Hospital
🇺🇸Houston, Texas, United States
Allegheny General Hospital
🇺🇸Pittsburgh, Pennsylvania, United States
University of Pittsburgh Medical Center
🇺🇸Pittsburgh, Pennsylvania, United States
Seattle Children's Hospital
🇺🇸Seattle, Washington, United States
Cincinnati Children's Hospital
🇺🇸Cincinnati, Ohio, United States
UC Health
🇺🇸Cincinnati, Ohio, United States
University of Minnesota Health
🇺🇸Minneapolis, Minnesota, United States
Duke University Medical Center
🇺🇸Durham, North Carolina, United States
Arizona Pulmonary Specialists, Ltd.
🇺🇸Phoenix, Arizona, United States
UCSF Medical Center
🇺🇸San Francisco, California, United States
UCSF Benioff Children's Hospital
🇺🇸San Francisco, California, United States
Henry Ford Hospital
🇺🇸Detroit, Michigan, United States
Vanderbilt Children's Hospital
🇺🇸Nashville, Tennessee, United States
Vanderbilt University Medical Center
🇺🇸Nashville, Tennessee, United States
University of Utah Health
🇺🇸Salt Lake City, Utah, United States
University of Connecticut Health
🇺🇸Farmington, Connecticut, United States
University of Virginia
🇺🇸Charlottesville, Virginia, United States
The Oregon Clinic
🇺🇸Portland, Oregon, United States
Washington University in St. Louis
🇺🇸Saint Louis, Missouri, United States
Rhode Island Hospital
🇺🇸Providence, Rhode Island, United States