Pulmonary Hypertension Association Registry

NCT ID: NCT04071327

Last Updated: 2025-11-14

Study Results

Results pending

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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Recruitment Status

RECRUITING

Total Enrollment

3000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2015-10-31

Study Completion Date

2025-12-31

Brief Summary

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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

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Conditions

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Pulmonary Arterial Hypertension Chronic Thromboembolic Pulmonary Hypertension Pulmonary Hypertension

Study Design

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Observational Model Type

COHORT

Study Time Perspective

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

* 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
Minimum Eligible Age

0 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Pulmonary Hypertension Association, Inc.

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Arizona Pulmonary Specialists, Ltd.

Phoenix, Arizona, United States

Site Status RECRUITING

UC Davis Health

Sacramento, California, United States

Site Status RECRUITING

UCSF Medical Center

San Francisco, California, United States

Site Status RECRUITING

UCSF Benioff Children's Hospital

San Francisco, California, United States

Site Status RECRUITING

Cottage Health System - Santa Barbara Pulmonary Associates

Santa Barbara, California, United States

Site Status RECRUITING

Stanford University

Stanford, California, United States

Site Status RECRUITING

Children's Hospital Colorado

Aurora, Colorado, United States

Site Status RECRUITING

UC Health - Anschutz Medical Campus

Aurora, Colorado, United States

Site Status RECRUITING

University of Connecticut Health

Farmington, Connecticut, United States

Site Status RECRUITING

Mayo Clinic Florida

Jacksonville, Florida, United States

Site Status RECRUITING

Northside Hospital

Atlanta, Georgia, United States

Site Status RECRUITING

Indiana University Health

Indianapolis, Indiana, United States

Site Status NOT_YET_RECRUITING

University of Iowa Hospitals & Clinic

Iowa City, Iowa, United States

Site Status RECRUITING

KU Medical Center

Kansas City, Kansas, United States

Site Status RECRUITING

Kentuckiana Pulmonary Associates

Louisville, Kentucky, United States

Site Status RECRUITING

Ochsner Medical Center

Jefferson, Louisiana, United States

Site Status RECRUITING

LSU Healthcare Network Clinic

New Orleans, Louisiana, United States

Site Status RECRUITING

University of MD Medical Group, PA

Baltimore, Maryland, United States

Site Status RECRUITING

Johns Hopkins University

Baltimore, Maryland, United States

Site Status RECRUITING

Henry Ford Hospital

Detroit, Michigan, United States

Site Status RECRUITING

University of Minnesota Health

Minneapolis, Minnesota, United States

Site Status RECRUITING

Mayo Clinic

Rochester, Minnesota, United States

Site Status RECRUITING

Washington University in St. Louis

St Louis, Missouri, United States

Site Status RECRUITING

Weill Cornell Medical Center

New York, New York, United States

Site Status RECRUITING

Columbia University Medical Center/NewYork-Presbyterian Hospital

New York, New York, United States

Site Status RECRUITING

University of Rochester Medical Center

Rochester, New York, United States

Site Status RECRUITING

UNC Chapel Hill

Chapel Hill, North Carolina, United States

Site Status RECRUITING

Duke University Medical Center

Durham, North Carolina, United States

Site Status RECRUITING

Cincinnati Children's Hospital

Cincinnati, Ohio, United States

Site Status RECRUITING

UC Health

Cincinnati, Ohio, United States

Site Status RECRUITING

The Oregon Clinic

Portland, Oregon, United States

Site Status RECRUITING

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Allegheny General Hospital

Pittsburgh, Pennsylvania, United States

Site Status RECRUITING

University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, United States

Site Status RECRUITING

Rhode Island Hospital

Providence, Rhode Island, United States

Site Status RECRUITING

AnMed Health

Anderson, South Carolina, United States

Site Status RECRUITING

Ft. Sanders Regional Medical Center

Knoxville, Tennessee, United States

Site Status RECRUITING

Vanderbilt Children's Hospital

Nashville, Tennessee, United States

Site Status RECRUITING

Vanderbilt University Medical Center

Nashville, Tennessee, United States

Site Status RECRUITING

UT Southwestern Medical Center

Dallas, Texas, United States

Site Status RECRUITING

Texas Children's Hospital

Houston, Texas, United States

Site Status RECRUITING

Baylor Scott & White

Plano, Texas, United States

Site Status RECRUITING

University of Utah Health

Salt Lake City, Utah, United States

Site Status RECRUITING

University of Virginia

Charlottesville, Virginia, United States

Site Status RECRUITING

Inova Fairfax Hospital

Falls Church, Virginia, United States

Site Status RECRUITING

Sentara Heart Hospital

Norfolk, Virginia, United States

Site Status RECRUITING

VCU Medical Center

Richmond, Virginia, United States

Site Status RECRUITING

Seattle Children's Hospital

Seattle, Washington, United States

Site Status RECRUITING

University of Washington

Seattle, Washington, United States

Site Status RECRUITING

University of Wisconsin Hospital and Clinics

Madison, Wisconsin, United States

Site Status RECRUITING

Aurora St. Luke's Medical Center

Milwaukee, Wisconsin, United States

Site Status RECRUITING

Froedtert & Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Elizabeth Joseloff, PhD

Role: CONTACT

301-565-3004 ext. 759

Charles D Burger, MD

Role: CONTACT

904-953-2000 ext. 904-953-2000

Facility Contacts

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Jeremy Feldman, MD

Role: primary

602-274-7195

Nikhil Jaha

Role: primary

916-734-1554

Cynthia Perry-Baker

Role: backup

916-734-1554

Teresa De Marco, MD

Role: primary

415-353-9088

Amanda Schnell Heringer, RN, CNS

Role: backup

415-353-9088

Jeffrey Fineman, MD

Role: primary

415-476-3679

Jasmine Becerra

Role: backup

415-476-2649

Jeffrey S. Sager, MD, MS

Role: primary

805-898-8840

Caitlin Torchia, RN

Role: backup

805-569-8993

Doris Stanley, BS

Role: primary

650-736-3678

Patricia Del Rosario, RN

Role: backup

650-721-2408

Dunbar Ivy, MD

Role: primary

720-777-6820

Kathleen Miller-Reed

Role: backup

720-777-6427

David Badesch, MD

Role: primary

303-880-8808

Kelly Hannon, RN

Role: backup

720-848-6518

Raymond Foley, DO

Role: primary

860-679-3585

Charles D. Burger

Role: primary

904-953-4374

Kristine Gundian, CRC

Role: backup

Paul Boyce, MD, MPH

Role: primary

404-257-0006

Tamara Wakhisi

Role: backup

404-236-8322

Michael Duncan, MD

Role: primary

317-962-9700

Melissa Astin, BSN

Role: backup

317-962-2072

Linda M. Cadaret, MD

Role: primary

319-356-7102

Paige Scovel

Role: backup

319-356-7102

Timothy Williamson, MD

Role: primary

913-588-6046

Wesley McConnell, MD

Role: primary

502-587-8000

Martha Royse, APRN

Role: backup

502-587-8000

Stacy Mandras, MD

Role: primary

504-842-4721

Angela Penning

Role: backup

504-703-5612

Matthew Lammi, MD

Role: primary

504-412-1517

Paula Lauto, RN

Role: backup

504-568-3451

Gautam V. Ramani, MD

Role: primary

410-328-7260

Lioubov Poliokova

Role: backup

Stephen C. Mathai, MD, MHS

Role: primary

410-614-6311

Julie Shamberger, RN

Role: backup

410-614-6311

Rana L. Awdish, MD

Role: primary

313-916-3757

Sheri Renaud, RN

Role: backup

313-916-3757

Thenappan Thenappan, MD

Role: primary

612-365-5000

Gretchen Piechel

Role: backup

Robert P. Frantz, MD

Role: primary

507-538-3270

Tonya Sands

Role: backup

507-538-7297

Murali M. Chakinala, MD

Role: primary

314-454-8917

Ellen Newton-Lovato, RN

Role: backup

314-454-8717

Evelyn M. Horn, MD

Role: primary

646-962-5555

Rosemarie Gadioma

Role: backup

646-962-5555

Erika S. Berman Rosenzweig, MD

Role: primary

212-305-4436

Daniela Brady, FNP

Role: backup

212-305-4436

R. James White, MD, PhD

Role: primary

585-486-0869

Allison Light-Mills, PhD

Role: backup

585-486-0869

H. James Ford, MD

Role: primary

919-966-2531

Laura Nowicki, RN

Role: backup

919-843-7871

Kishan Parikh, MD

Role: primary

Noely Martinez-Overby, CMA

Role: backup

Russel Hirsch, MD

Role: primary

513-636-7072

Alyssa Rhode, BS

Role: backup

513-636-7072

Jean M. Elwing, MD

Role: primary

513-475-8523

Jennifer Gilkison, RN, BSN

Role: backup

513-475-8523

Jeffrey C. Robinson, MD

Role: primary

503-297-3778

Stephanie Persons, BS

Role: backup

503-963-3093

Steven M. Kawut, MD, MS

Role: primary

800-789-7366

Randi Goodman

Role: backup

215-294-9758

Amresh Raina, MD

Role: primary

412-359-3551

Kimberly Curry, RN

Role: backup

412-359-4608

Marc A. Simon, MD, MS

Role: primary

412-802-3131

Abby Sung

Role: backup

412-648-6024

Corey E. Ventetuolo, MD, MS

Role: primary

401-444-0008

Amy Palmisciano, BSN

Role: backup

401-444-4961

Abhijit Raval, MD

Role: primary

864-225-5667

Kelly Dickson, RRT

Role: backup

864-512-6625

John Swisher, MD, PhD

Role: primary

865-588-8831

Regina Overton-Barnes, APN

Role: backup

Eric D. Austin, MD, MSc

Role: primary

615-875-6901

Karen Chaffin, NP

Role: backup

615-936-2233

Anna R. Hemnes, MD

Role: primary

615-322-3412

Sonja D. Bartolome, MD

Role: primary

214-645-5505

Balaji Kolasani

Role: backup

214-645-1295

Nidhy Varghese, MD

Role: primary

832-822-3300

Elise Whalen, MSN

Role: backup

832-822-1879

Sahil Bakshi, MD

Role: primary

469-814-3897

Lucy Knight

Role: backup

469-814-4727

John J. Ryan, MD

Role: primary

801-585-7676

Brittany Penn

Role: backup

801-585-2469

Sula Mazimba, MD

Role: primary

434-982-1058

Allison Raymond, RN, CCRC

Role: backup

434-982-1058

Oksana A. Shlobin, MD

Role: primary

703-776-2986

Edwinia Battle, BSN, CCRC

Role: backup

703-776-3067

Michael S. Eggert, MD

Role: primary

757-388-2831

Melinda Bullivant, MSN, RN, CCRC

Role: backup

757-388-4024

Daniel Grinnan, MD

Role: primary

800-828-9000

Charnetta Lester

Role: backup

804-828-9000

Delphine Yung, MD

Role: primary

Anne Davis, RN

Role: backup

Peter Leary, MD, PhD

Role: primary

206-685-2484

Genecelle Delossantos

Role: backup

206-543-8334

James R. Runo, MD

Role: primary

608-263-7203

Amy Chybowski, NP

Role: backup

608-263-6400

Dianne L. Zwicke, MD

Role: primary

414-646-2438

Michelle Cicona

Role: backup

414-646-0424

Kenneth W. Presberg, MD

Role: primary

414-955-7032

Amy Kimber, APNP

Role: backup

414-955-7033

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.

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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.

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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.

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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.

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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.

Reference Type BACKGROUND
PMID: 36879444 (View on PubMed)

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.

Reference Type BACKGROUND
PMID: 37335853 (View on PubMed)

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.

Reference Type BACKGROUND
PMID: 37614830 (View on PubMed)

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.

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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.

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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.

Reference Type BACKGROUND
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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.

Reference Type DERIVED
PMID: 36787969 (View on PubMed)

Related Links

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Other Identifiers

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PHAR

Identifier Type: -

Identifier Source: org_study_id

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