Pulmonary Hypertension Association Registry (PHAR)

April 1, 2020 updated by: Pulmonary Hypertension Association, Inc.

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.

Study Overview

Status

Recruiting

Conditions

Study Type

Observational

Enrollment (Anticipated)

3000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

  • United States
    • Arizona
      • Phoenix, Arizona, United States, 85012
        • Recruiting
        • Arizona Pulmonary Specialists, Ltd.
        • Principal Investigator:
          • Jeremy Feldman, MD
        • Contact:
          • Jeremy Feldman, MD
          • Phone Number: 602-274-7195
    • California
      • Sacramento, California, United States, 95816
        • Recruiting
        • UC Davis Health
        • Contact:
        • Contact:
        • Principal Investigator:
          • Roblee P. Allen, MD
      • San Francisco, California, United States, 94143
        • Recruiting
        • UCSF Medical Center
        • Contact:
        • Contact:
        • Principal Investigator:
          • Teresa De Marco, MD
      • San Francisco, California, United States, 94158
        • Recruiting
        • UCSF Benioff Children's Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Jeffrey Fineman, MD
        • Sub-Investigator:
          • Elizabeth Colglazier, CPNP
      • Santa Barbara, California, United States, 93105
        • Recruiting
        • Cottage Health System - Santa Barbara Pulmonary Associates
        • Contact:
        • Contact:
        • Principal Investigator:
          • Jeffrey S. Sager, MD, MS
        • Sub-Investigator:
          • Richard A. Belkin, MD, MS
      • Stanford, California, United States, 94305
        • Recruiting
        • Stanford University
        • Contact:
        • Contact:
        • Principal Investigator:
          • Roham T. Zamanian, MD
    • Colorado
      • Aurora, Colorado, United States, 80045
      • Aurora, Colorado, United States, 80045
        • Recruiting
        • UC Health - Anschutz Medical Campus
        • Contact:
        • Contact:
        • Principal Investigator:
          • David Badesch, MD
        • Principal Investigator:
          • Todd M. Bull, MD
    • Connecticut
      • Farmington, Connecticut, United States, 06030
        • Recruiting
        • University of Connecticut Health
        • Contact:
        • Principal Investigator:
          • Raymond Foley, DO
    • Florida
      • Jacksonville, Florida, United States, 32224
        • Recruiting
        • Mayo Clinic Florida
        • Contact:
        • Contact:
        • Principal Investigator:
          • Charles D. Burger, MD
        • Sub-Investigator:
          • John E. Moss, MD
    • Georgia
      • Atlanta, Georgia, United States, 30342
    • Indiana
      • Indianapolis, Indiana, United States, 46202
        • Not yet recruiting
        • Indiana University Health
        • Contact:
        • Contact:
        • Principal Investigator:
          • Michael Duncan, MD
        • Sub-Investigator:
          • Roberto Machado, MD
        • Sub-Investigator:
          • Tim Lahm, MD
        • Sub-Investigator:
          • Ankit Desai, MD
        • Sub-Investigator:
          • William Harvey, MD
    • Iowa
      • Iowa City, Iowa, United States, 52242
        • Recruiting
        • University of Iowa Hospitals & Clinic
        • Contact:
          • Linda M. Cadaret, MD
          • Phone Number: 319-356-7102
        • Contact:
          • Paige Scovel
          • Phone Number: 319-356-7102
        • Principal Investigator:
          • Linda M. Cadaret, MD
    • Kansas
      • Kansas City, Kansas, United States, 66160
        • Recruiting
        • KU Medical Center
        • Contact:
        • Principal Investigator:
          • Timothy Williamson, MD
    • Kentucky
      • Louisville, Kentucky, United States, 40202
        • Recruiting
        • Kentuckiana Pulmonary Associates
        • Contact:
          • Wesley McConnell, MD
          • Phone Number: 502-587-8000
        • Contact:
          • Martha Royse, APRN
          • Phone Number: 502-587-8000
        • Principal Investigator:
          • Wesley McConnell, MD
    • Louisiana
      • Jefferson, Louisiana, United States, 70121
        • Recruiting
        • Ochsner Medical Center
        • Contact:
        • Contact:
        • Principal Investigator:
          • Stacy Mandras, MD
      • New Orleans, Louisiana, United States, 70115
        • Recruiting
        • LSU Healthcare Network Clinic
        • Contact:
        • Contact:
        • Principal Investigator:
          • Matthew Lammi, MD
        • Principal Investigator:
          • Bennett deBoisblanc, MD
    • Maryland
      • Baltimore, Maryland, United States, 21287
        • Recruiting
        • Johns Hopkins University
        • Contact:
        • Contact:
        • Principal Investigator:
          • Stephen C. Mathai, MD, MHS
        • Principal Investigator:
          • Paul M. Hassoun, MD
      • Baltimore, Maryland, United States, 21201
    • Michigan
      • Detroit, Michigan, United States, 48202
        • Recruiting
        • Henry Ford Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Rana L. Awdish, MD
        • Sub-Investigator:
          • Sara Hegab, MD
    • Minnesota
      • Minneapolis, Minnesota, United States, 55455
        • Recruiting
        • University of Minnesota Health
        • Contact:
        • Contact:
        • Principal Investigator:
          • Thenappan Thenappan, MD
        • Sub-Investigator:
          • Marc Pritzker, MD
        • Sub-Investigator:
          • Kurt Prins, MD
      • Rochester, Minnesota, United States, 55905
        • Recruiting
        • Mayo Clinic
        • Contact:
        • Contact:
          • Tonya Sands
          • Phone Number: 507-538-7297
        • Principal Investigator:
          • Robert P. Frantz, MD
    • Missouri
      • Saint Louis, Missouri, United States, 63110
        • Recruiting
        • Washington University in St. Louis
        • Contact:
        • Contact:
        • Principal Investigator:
          • Murali M. Chakinala, MD
        • Principal Investigator:
          • Colleen A. McEvoy, MD
    • New York
      • New York, New York, United States, 10021
        • Recruiting
        • Weill Cornell Medical Center
        • Contact:
        • Contact:
        • Principal Investigator:
          • Evelyn M. Horn, MD
        • Principal Investigator:
          • Udhay Krishnan, MD
      • New York, New York, United States, 10032
        • Recruiting
        • Columbia University Medical Center/NewYork-Presbyterian Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Erika S. Berman Rosenzweig, MD
      • Rochester, New York, United States, 14642-0001
        • Recruiting
        • University of Rochester Medical Center
        • Contact:
        • Contact:
        • Principal Investigator:
          • R. James White, MD, PhD
        • Sub-Investigator:
          • Daniel Lachant, DO
    • North Carolina
      • Chapel Hill, North Carolina, United States, 27517
        • Recruiting
        • UNC Chapel Hill
        • Contact:
        • Contact:
        • Principal Investigator:
          • H. James Ford, MD
        • Sub-Investigator:
          • Barbara LeVarge, MD
      • Durham, North Carolina, United States, 27710
        • Recruiting
        • Duke University Medical Center
        • Contact:
        • Contact:
        • Principal Investigator:
          • Kishan Parikh, MD
        • Principal Investigator:
          • Terry Fortin, MD, MS
    • Ohio
      • Cincinnati, Ohio, United States, 45229
        • Recruiting
        • Cincinnati Children's Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Russel Hirsch, MD
      • Cincinnati, Ohio, United States, 45267
        • Recruiting
        • UC Health
        • Contact:
        • Contact:
        • Principal Investigator:
          • Jean M. Elwing, MD
        • Sub-Investigator:
          • Arun Jose, MD
    • Oregon
      • Portland, Oregon, United States, 97225
        • Recruiting
        • The Oregon Clinic
        • Contact:
        • Contact:
        • Principal Investigator:
          • Jeffrey C. Robinson, MD
    • Pennsylvania
      • Philadelphia, Pennsylvania, United States, 19104
        • Recruiting
        • University of Pennsylvania
        • Contact:
          • Steven M. Kawut, MD, MS
          • Phone Number: 800-789-7366
          • Email: kawut@upenn.edu
        • Contact:
        • Principal Investigator:
          • Steven M. Kawut, MD, MS
      • Pittsburgh, Pennsylvania, United States, 15213
        • Recruiting
        • University of Pittsburgh Medical Center
        • Contact:
        • Contact:
        • Principal Investigator:
          • Marc A. Simon, MD, MS
        • Principal Investigator:
          • Stephen Chan, MD, PhD
        • Sub-Investigator:
          • Gavin Hickey, MD
        • Sub-Investigator:
          • Jennifer Kliner
        • Sub-Investigator:
          • Michael Mathier, MD
        • Sub-Investigator:
          • Dennis McNamara, MD
        • Sub-Investigator:
          • Ravi Ramani, MD
      • Pittsburgh, Pennsylvania, United States, 15212
        • Recruiting
        • Allegheny General Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Amresh Raina, MD
    • Rhode Island
      • Providence, Rhode Island, United States, 02903
        • Recruiting
        • Rhode Island Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Corey E. Ventetuolo, MD, MS
        • Principal Investigator:
          • James R. Klinger, MD
    • South Carolina
      • Anderson, South Carolina, United States, 29621
    • Tennessee
      • Knoxville, Tennessee, United States, 37916
        • Recruiting
        • Ft. Sanders Regional Medical Center
        • Contact:
          • John Swisher, MD, PhD
          • Phone Number: 865-588-8831
        • Contact:
        • Principal Investigator:
          • John Swisher, MD, PhD
      • Nashville, Tennessee, United States, 37232
        • Recruiting
        • Vanderbilt University Medical Center
        • Contact:
        • Principal Investigator:
          • Anna R. Hemnes, MD
      • Nashville, Tennessee, United States, 37232
        • Recruiting
        • Vanderbilt Children's Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Eric D. Austin, MD
    • Texas
      • Dallas, Texas, United States, 75390
      • Houston, Texas, United States, 77030
      • Plano, Texas, United States, 75093
        • Recruiting
        • Baylor Scott & White
        • Contact:
        • Contact:
        • Principal Investigator:
          • Sahil Bakshi, MD
        • Sub-Investigator:
          • Adrian Felder
    • Utah
      • Salt Lake City, Utah, United States, 84132
        • Recruiting
        • University of Utah Health
        • Contact:
        • Contact:
        • Principal Investigator:
          • John J. Ryan, MD
    • Virginia
      • Charlottesville, Virginia, United States, 22908
      • Falls Church, Virginia, United States, 22042
        • Recruiting
        • Inova Fairfax Hospital
        • Contact:
        • Contact:
        • Principal Investigator:
          • Oksana A. Shlobin, MD
        • Principal Investigator:
          • Steven Nathan, MD
      • Norfolk, Virginia, United States, 23507
        • Recruiting
        • Sentara Heart Hospital
        • Contact:
          • Michael S. Eggert, MD
          • Phone Number: 757-388-2831
        • Contact:
        • Principal Investigator:
          • Michael S. Eggert, MD
        • Sub-Investigator:
          • Vanessa Knowles, NP
      • Richmond, Virginia, United States, 23298
    • Washington
      • Seattle, Washington, United States, 98105
      • Seattle, Washington, United States, 98195
        • Recruiting
        • University of Washington
        • Contact:
          • Peter Leary, MD, PhD
          • Phone Number: 206-685-2484
          • Email: learyp@uw.edu
        • Contact:
        • Principal Investigator:
          • Peter Leary, MD, PhD
    • Wisconsin
      • Madison, Wisconsin, United States, 53792
        • Recruiting
        • University of Wisconsin Hospital and Clinics
        • Contact:
        • Contact:
        • Principal Investigator:
          • James R. Runo, MD
        • Sub-Investigator:
          • Kara N. Goss, MD
      • Milwaukee, Wisconsin, United States, 53226
        • Recruiting
        • Froedtert & Medical College of Wisconsin
        • Contact:
        • Contact:
        • Principal Investigator:
          • Kenneth W. Presberg, MD
        • Sub-Investigator:
          • David Ishizawar, MD
      • Milwaukee, Wisconsin, United States, 53215
        • Recruiting
        • Aurora St. Luke's Medical Center
        • Contact:
          • Dianne L. Zwicke, MD
          • Phone Number: 414-646-2438
        • Contact:
        • Principal Investigator:
          • Dianne L. Zwicke, MD

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.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

New patients to a PHA-accredited PH Care Center (PHCC) with either newly diagnosed or established 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 the PHCC.

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Cohort
  • Time Perspectives: Prospective

Cohorts and Interventions

Group / Cohort
Pulmonary arterial hypertension (PAH)
Patients with newly diagnosed or established PAH, within 6 months of first outpatient visit to a PH Care Center
Chronic thromboembolic pulmonary hypertension (CTEPH)
Patients with newly diagnosed or established CTEPH, within 6 months of first outpatient visit to a PH Care Center
Group 3 PH due to Developmental Lung Disease
Pediatric patients with newly diagnosed or established Group 3 PH due to developmental lung disease, within 6 months of first outpatient visit to a PH Care Center.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Survival
Time Frame: 10 years
10 years
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"
10 years
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.
10 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Pulmonary Hypertension Association, Inc.

Collaborators

University of Washington, the Collaborative Health Studies Coordinating Center

Investigators

  • Study Chair: Daniel Grinnan, MD, Virginia Commonwealth University

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

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 Major Dates

Study Start (Actual)

October 1, 2015

Primary Completion (Anticipated)

October 1, 2025

Study Completion (Anticipated)

October 1, 2025

Study Registration Dates

First Submitted

April 4, 2019

First Submitted That Met QC Criteria

August 24, 2019

First Posted (Actual)

August 28, 2019

Study Record Updates

Last Update Posted (Actual)

April 3, 2020

Last Update Submitted That Met QC Criteria

April 1, 2020

Last Verified

April 1, 2020

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

  • PHAR

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

Yes

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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