RECRUITING
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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.
Conditions:
🦠 Pulmonary Arterial Hypertension 🦠 Chronic Thromboembolic Pulmonary Hypertension 🦠 Pulmonary Hypertension
🗓️ Study Start (Actual) October 2015
🗓️ Primary Completion (Estimated) October 2025
✅ Study Completion (Estimated) October 2025
👥 Enrollment (Estimated) 3000
🔬 Study Type OBSERVATIONAL
📊 Phase N/A
Locations:
📍 Phoenix, Arizona, United States
📍 Sacramento, California, United States
📍 San Francisco, California, United States
📍 San Francisco, California, United States
📍 Santa Barbara, California, United States
📍 Stanford, California, United States
📍 Aurora, Colorado, United States
📍 Aurora, Colorado, United States
📍 Farmington, Connecticut, United States
📍 Jacksonville, Florida, United States
📍 Atlanta, Georgia, United States
📍 Indianapolis, Indiana, United States
📍 Iowa City, Iowa, United States
📍 Kansas City, Kansas, United States
📍 Louisville, Kentucky, United States
📍 Jefferson, Louisiana, United States
📍 New Orleans, Louisiana, United States
📍 Baltimore, Maryland, United States
📍 Baltimore, Maryland, United States
📍 Detroit, Michigan, United States
📍 Minneapolis, Minnesota, United States
📍 Rochester, Minnesota, United States
📍 Saint Louis, Missouri, United States
📍 New York, New York, United States
📍 New York, New York, United States
📍 Rochester, New York, United States
📍 Chapel Hill, North Carolina, United States
📍 Durham, North Carolina, United States
📍 Cincinnati, Ohio, United States
📍 Cincinnati, Ohio, United States
📍 Portland, Oregon, United States
📍 Philadelphia, Pennsylvania, United States
📍 Pittsburgh, Pennsylvania, United States
📍 Pittsburgh, Pennsylvania, United States
📍 Providence, Rhode Island, United States
📍 Anderson, South Carolina, United States
📍 Knoxville, Tennessee, United States
📍 Nashville, Tennessee, United States
📍 Nashville, Tennessee, United States
📍 Dallas, Texas, United States
📍 Houston, Texas, United States
📍 Plano, Texas, United States
📍 Salt Lake City, Utah, United States
📍 Charlottesville, Virginia, United States
📍 Falls Church, Virginia, United States
📍 Norfolk, Virginia, United States
📍 Richmond, Virginia, United States
📍 Seattle, Washington, United States
📍 Seattle, Washington, United States
📍 Madison, Wisconsin, United States
📍 Milwaukee, Wisconsin, United States
📍 Milwaukee, Wisconsin, United States
More locations available...

📋 Eligibility Criteria

Description

    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
Ages Eligible for Study: 0 Years to N/A (CHILD, ADULT, OLDER_ADULT)
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers: No

🗓️ Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

  • First Submitted 4 April 2019
  • First Submitted that Met QC Criteria 24 August 2019
  • First Posted 28 August 2019

Study Record Updates

  • Last Update Submitted that Met QC Criteria 14 May 2024
  • Last Update Posted 16 May 2024
  • Last Verified May 2024
I'm interested ...!!