Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
3000 participants
OBSERVATIONAL
2015-10-31
2025-12-31
Brief Summary
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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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Detailed Description
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Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Pulmonary arterial hypertension (PAH)
Patients with newly diagnosed or established PAH, within 6 months of first outpatient visit to a PH Care Center
No interventions assigned to this group
Chronic thromboembolic pulmonary hypertension (CTEPH)
Patients with newly diagnosed or established CTEPH, within 6 months of first outpatient visit to a PH Care Center
No interventions assigned to this group
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.
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* 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 3 pulmonary hypertension, except PH due to developmental lung disease
* Diagnosis of WSPH Group 5 pulmonary hypertension
0 Years
ALL
No
Sponsors
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Pulmonary Hypertension Association, Inc.
OTHER
Responsible Party
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Locations
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Arizona Pulmonary Specialists, Ltd.
Phoenix, Arizona, United States
UC Davis Health
Sacramento, California, United States
UCSF Medical Center
San Francisco, California, United States
UCSF Benioff Children's Hospital
San Francisco, California, United States
Cottage Health System - Santa Barbara Pulmonary Associates
Santa Barbara, 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
University of Connecticut Health
Farmington, Connecticut, United States
Mayo Clinic Florida
Jacksonville, Florida, United States
Northside Hospital
Atlanta, Georgia, United States
Indiana University Health
Indianapolis, Indiana, United States
University of Iowa Hospitals & Clinic
Iowa City, Iowa, United States
KU Medical Center
Kansas City, Kansas, United States
Kentuckiana Pulmonary Associates
Louisville, Kentucky, United States
Ochsner Medical Center
Jefferson, Louisiana, United States
LSU Healthcare Network Clinic
New Orleans, Louisiana, United States
University of MD Medical Group, PA
Baltimore, Maryland, United States
Johns Hopkins University
Baltimore, Maryland, United States
Henry Ford Hospital
Detroit, Michigan, United States
University of Minnesota Health
Minneapolis, Minnesota, United States
Mayo Clinic
Rochester, Minnesota, United States
Washington University in St. Louis
St Louis, Missouri, 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
UNC Chapel Hill
Chapel Hill, North Carolina, United States
Duke University Medical Center
Durham, North Carolina, United States
Cincinnati Children's Hospital
Cincinnati, Ohio, United States
UC Health
Cincinnati, Ohio, United States
The Oregon Clinic
Portland, Oregon, United States
University of Pennsylvania
Philadelphia, Pennsylvania, United States
Allegheny General Hospital
Pittsburgh, Pennsylvania, United States
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, United States
Rhode Island Hospital
Providence, Rhode Island, United States
AnMed Health
Anderson, South Carolina, United States
Ft. Sanders Regional Medical Center
Knoxville, Tennessee, United States
Vanderbilt Children's Hospital
Nashville, Tennessee, United States
Vanderbilt University Medical Center
Nashville, Tennessee, United States
UT Southwestern Medical Center
Dallas, Texas, United States
Texas Children's Hospital
Houston, Texas, United States
Baylor Scott & White
Plano, Texas, United States
University of Utah Health
Salt Lake City, Utah, United States
University of Virginia
Charlottesville, Virginia, United States
Inova Fairfax Hospital
Falls Church, Virginia, United States
Sentara Heart Hospital
Norfolk, Virginia, United States
VCU Medical Center
Richmond, Virginia, United States
Seattle Children's Hospital
Seattle, Washington, United States
University of Washington
Seattle, Washington, United States
University of Wisconsin Hospital and Clinics
Madison, Wisconsin, United States
Aurora St. Luke's Medical Center
Milwaukee, Wisconsin, United States
Froedtert & Medical College of Wisconsin
Milwaukee, Wisconsin, United States
Countries
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Central Contacts
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Facility Contacts
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Jeremy Feldman, MD
Role: primary
Linda M. Cadaret, MD
Role: primary
Paige Scovel
Role: backup
Wesley McConnell, MD
Role: primary
Martha Royse, APRN
Role: backup
Tonya Sands
Role: backup
John Swisher, MD, PhD
Role: primary
Michael S. Eggert, MD
Role: primary
Dianne L. Zwicke, MD
Role: primary
References
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Hemnes AR, Beck GJ, Newman JH, Abidov A, Aldred MA, Barnard J, Berman Rosenzweig E, Borlaug BA, Chung WK, Comhair SAA, Erzurum SC, Frantz RP, Gray MP, Grunig G, Hassoun PM, Hill NS, Horn EM, Hu B, Lempel JK, Maron BA, Mathai SC, Olman MA, Rischard FP, Systrom DM, Tang WHW, Waxman AB, Xiao L, Yuan JX, Leopold JA; PVDOMICS Study Group. PVDOMICS: A Multi-Center Study to Improve Understanding of Pulmonary Vascular Disease Through Phenomics. Circ Res. 2017 Oct 27;121(10):1136-1139. doi: 10.1161/CIRCRESAHA.117.311737.
Tang WHW, Wilcox JD, Jacob MS, Rosenzweig EB, Borlaug BA, Frantz RP, Hassoun PM, Hemnes AR, Hill NS, Horn EM, Singh HS, Systrom DM, Tedford RJ, Vanderpool RR, Waxman AB, Xiao L, Leopold JA, Rischard FP. Comprehensive Diagnostic Evaluation of Cardiovascular Physiology in Patients With Pulmonary Vascular Disease: Insights From the PVDOMICS Program. Circ Heart Fail. 2020 Mar;13(3):e006363. doi: 10.1161/CIRCHEARTFAILURE.119.006363. Epub 2020 Feb 24.
Jellis CL, Park MM, Abidov A, Borlaug BA, Brittain EL, Frantz R, Hassoun PM, Horn EM, Jaber WA, Jiwon K, Karas MG, Kwon D, Leopold JA, Maron B, Mathai SC, Mehra R, Rischard F, Rosenzweig EB, Tang WHW, Vanderpool R, Thomas JD; PVDOMICS Study Group. Comprehensive echocardiographic evaluation of the right heart in patients with pulmonary vascular diseases: the PVDOMICS experience. Eur Heart J Cardiovasc Imaging. 2022 Jun 21;23(7):958-969. doi: 10.1093/ehjci/jeab065.
Hemnes AR, Leopold JA, Radeva MK, Beck GJ, Abidov A, Aldred MA, Barnard J, Rosenzweig EB, Borlaug BA, Chung WK, Comhair SAA, Desai AA, Dubrock HM, Erzurum SC, Finet JE, Frantz RP, Garcia JGN, Geraci MW, Gray MP, Grunig G, Hassoun PM, Highland KB, Hill NS, Hu B, Kwon DH, Jacob MS, Jellis CL, Larive AB, Lempel JK, Maron BA, Mathai SC, McCarthy K, Mehra R, Nawabit R, Newman JH, Olman MA, Park MM, Ramos JA, Renapurkar RD, Rischard FP, Sherer SG, Tang WHW, Thomas JD, Vanderpool RR, Waxman AB, Wilcox JD, Yuan JX, Horn EM; PVDOMICS Study Group. Clinical Characteristics and Transplant-Free Survival Across the Spectrum of Pulmonary Vascular Disease. J Am Coll Cardiol. 2022 Aug 16;80(7):697-718. doi: 10.1016/j.jacc.2022.05.038.
Frantz RP, Leopold JA, Hassoun PM, Hemnes AR, Horn EM, Mathai SC, Rischard FP, Larive AB, Tang WHW, Park MM, Hill NS, Rosenzweig EB. Acute vasoreactivity testing during right heart catheterization in chronic thromboembolic pulmonary hypertension: Results from the pulmonary vascular disease phenomics study. Pulm Circ. 2023 Jan 6;13(1):e12181. doi: 10.1002/pul2.12181. eCollection 2023 Jan.
Martens P, Yu S, Larive B, Borlaug BA, Erzurum SC, Farha S, Finet JE, Grunig G, Hemnes AR, Hill NS, Horn EM, Jacob M, Kwon DH, Park MM, Rischard FP, Rosenzweig EB, Wilcox JD, Tang WHW; PVDOMICS Study Group. Iron deficiency in pulmonary vascular disease: pathophysiological and clinical implications. Eur Heart J. 2023 Jun 9;44(22):1979-1991. doi: 10.1093/eurheartj/ehad149.
Simpson CE, Hemnes AR, Griffiths M, Grunig G, Tang WHW, Garcia JGN, Barnard J, Comhair SA, Damico RL, Mathai SC, Hassoun PM; PVDOMICS Study Group. Metabolomic Differences in Connective Tissue Disease-Associated Versus Idiopathic Pulmonary Arterial Hypertension in the PVDOMICS Cohort. Arthritis Rheumatol. 2023 Dec;75(12):2240-2251. doi: 10.1002/art.42632. Epub 2023 Oct 30.
Naranjo M, Rosenzweig EB, Hemnes AR, Jacob M, Desai A, Hill NS, Larive AB, Finet JE, Leopold J, Horn E, Frantz R, Rischard F, Erzurum S, Beck G, Mathai SC, Hassoun PM; PVDOMICS Study Group. Frequency of acute vasodilator response (AVR) in incident and prevalent patients with pulmonary arterial hypertension: Results from the pulmonary vascular disease phenomics study. Pulm Circ. 2023 Aug 21;13(3):e12281. doi: 10.1002/pul2.12281. eCollection 2023 Jul.
Simpson CE, Ambade AS, Harlan R, Roux A, Aja S, Graham D, Shah AA, Hummers LK, Hemnes AR, Leopold JA, Horn EM, Berman-Rosenzweig ES, Grunig G, Aldred MA, Barnard J, Comhair SAA, Tang WHW, Griffiths M, Rischard F, Frantz RP, Erzurum SC, Beck GJ, Hill NS, Mathai SC, Hassoun PM, Damico RL; the PVDOMICS Study Group. Kynurenine pathway metabolism evolves with development of preclinical and scleroderma-associated pulmonary arterial hypertension. Am J Physiol Lung Cell Mol Physiol. 2023 Nov 1;325(5):L617-L627. doi: 10.1152/ajplung.00177.2023. Epub 2023 Oct 3.
Lowery MM, Hill NS, Wang L, Rosenzweig EB, Bhat A, Erzurum S, Finet JE, Jellis CL, Kaur S, Kwon DH, Nawabit R, Radeva M, Beck GJ, Frantz RP, Hassoun PM, Hemnes AR, Horn EM, Leopold JA, Rischard FP, Mehra R; Pulmonary Vascular Disease Phenomics (PVDOMICS) Study Group. Sleep-Related Hypoxia, Right Ventricular Dysfunction, and Survival in Patients With Group 1 Pulmonary Arterial Hypertension. J Am Coll Cardiol. 2023 Nov 21;82(21):1989-2005. doi: 10.1016/j.jacc.2023.09.806.
Rischard FP, Bernardo RJ, Vanderpool RR, Kwon DH, Acharya T, Park MM, Katrynuik A, Insel M, Kubba S, Badagliacca R, Larive AB, Naeije R, Garcia JGN, Beck GJ, Erzurum SC, Frantz RP, Hassoun PM, Hemnes AR, Hill NS, Horn EM, Leopold JA, Rosenzweig EB, Tang WHW, Wilcox JD. Classification and Predictors of Right Ventricular Functional Recovery in Pulmonary Arterial Hypertension. Circ Heart Fail. 2023 Oct;16(10):e010555. doi: 10.1161/CIRCHEARTFAILURE.123.010555. Epub 2023 Sep 4.
McCormick A, Krishnan A, Badesch D, Benza RL, Bull TM, De Marco T, Feldman J, Hemnes AR, Hirsch R, Horn E, Kennedy J, Mathai SC, McConnell W, Pugliese SC, Sager JS, Shlobin OA, Simon MA, Lammi MR. Pulmonary artery compliance in different forms of pulmonary hypertension. Heart. 2023 Jun 26;109(14):1098-1105. doi: 10.1136/heartjnl-2022-321760.
Related Links
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Related Info
Other Identifiers
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PHAR
Identifier Type: -
Identifier Source: org_study_id
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