Pulmonary Arterial HypertensionPHARNCT04071327
Pulmonary Hypertension Association Registry
An observational study of Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension, run by Pulmonary Hypertension Association, Inc. at 52 sites in United States.
Trial 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… Read more about this study
- Who is it for?
- Ages 0 years and older
- Conditions the study is for
- Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension
- How many people
- 3,000 participants
- Where
- 52 sitesUnited States
- Study dates
- Oct 2015to Dec 2025
- How long will I take part?
- 10 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 0 years and older
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
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.
Who may be able to join
- 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
Who cannot join
- 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
Trial locations and contacts
52 sites in 1 country. Contact the study team or a site near you to ask about taking part.
52 sites in 1 country
United States52 sites, 52 recruiting
- Recruiting
AnMed Health
Anderson, South Carolina, 29621
Abhijit Raval, MD, 864-225-5667, drravallung@gmail.com
Kelly Dickson, RRT, 864-512-6625, kelly.dickson@anmedhealth.org
- Recruiting
Northside Hospital
Atlanta, Georgia, 30342
Paul Boyce, MD, MPH, 404-257-0006, paul.boyce@northside.com
Tamara Wakhisi, 404-236-8322, tamara.wakhisi@northside.com
- Recruiting
Children's Hospital Colorado
Aurora, Colorado, 80045
Dunbar Ivy, MD, 720-777-6820, dunbar.ivy@childrenscolorado.org
Kathleen Miller-Reed, 720-777-6427, kathleen.miller-reed@childrenscolorado.org
- Recruiting
UC Health - Anschutz Medical Campus
Aurora, Colorado, 80045
David Badesch, MD, 303-880-8808, david.badesch@cuanschutz.edu
Kelly Hannon, RN, 720-848-6518, kelly.hannon@cuanschutz.edu
- Recruiting
University of MD Medical Group, PA
Baltimore, Maryland, 21201
Gautam V. Ramani, MD, 410-328-7260, gramani@som.umaryland.edu
Lioubov Poliokova, lpoliako@som.umaryland.edu
- Recruiting
Johns Hopkins University
Baltimore, Maryland, 21287
Stephen C. Mathai, MD, MHS, 410-614-6311, smathai4@jhmi.edu
Julie Shamberger, RN, 410-614-6311, jshambe2@jhmi.edu
- Recruiting
UNC Chapel Hill
Chapel Hill, North Carolina, 27517
H. James Ford, MD, 919-966-2531, hjford@med.unc.edu
Laura Nowicki, RN, 919-843-7871, laura_nowicki@med.unc.edu
- Recruiting
University of Virginia
Charlottesville, Virginia, 22908
Sula Mazimba, MD, 434-982-1058, sm8sd@hscmail.mcc.virginia.edu
Allison Raymond, RN, CCRC, 434-982-1058, AEH4M@hscmail.mcc.virginia.edu
- Recruiting
Cincinnati Children's Hospital
Cincinnati, Ohio, 45229
Russel Hirsch, MD, 513-636-7072, russel.hirsch@cchmc.org
Alyssa Rhode, BS, 513-636-7072, alyssa.rhode@cchmc.org
- Recruiting
UC Health
Cincinnati, Ohio, 45267
Jean M. Elwing, MD, 513-475-8523, elwingj@ucmail.uc.edu
Jennifer Gilkison, RN, BSN, 513-475-8523, gilkisjr@ucmail.uc.edu
- Recruiting
UT Southwestern Medical Center
Dallas, Texas, 75390
Sonja D. Bartolome, MD, 214-645-5505, sonja.bartolome@utsouthwestern.edu
Balaji Kolasani, 214-645-1295, balaji.kolasani@utsouthwestern.edu
- Recruiting
Henry Ford Hospital
Detroit, Michigan, 48202
Rana L. Awdish, MD, 313-916-3757, rawdish1@hfhs.org
Sheri Renaud, RN, 313-916-3757, srenaud9@hfhs.org
- Recruiting
Duke University Medical Center
Durham, North Carolina, 27710
Kishan Parikh, MD, kishan.parikh@duke.edu
Noely Martinez-Overby, CMA, noely.martinez-overby@duke.edu
- Recruiting
Inova Fairfax Hospital
Falls Church, Virginia, 22042
Oksana A. Shlobin, MD, 703-776-2986, oksana.shlobin@inova.org
Edwinia Battle, BSN, CCRC, 703-776-3067, edwinia.battle@inova.org
- Recruiting
University of Connecticut Health
Farmington, Connecticut, 06030
Raymond Foley, DO, 860-679-3585, r.foley@uchc.edu
Raymond Foley, DO
- Recruiting
Texas Children's Hospital
Houston, Texas, 77030
Nidhy Varghese, MD, 832-822-3300, npvarghe@texaschildrens.com
Elise Whalen, MSN, 832-822-1879, ecbockov@texaschildrens.com
- Not yet recruiting
Indiana University Health
Indianapolis, Indiana, 46202
Michael Duncan, MD, 317-962-9700, mduncan3@iuhealth.org
Melissa Astin, BSN, 317-962-2072, mastin@iuhealth.org
- Recruiting
University of Iowa Hospitals & Clinic
Iowa City, Iowa, 52242
Linda M. Cadaret, MD, 319-356-7102
Paige Scovel, 319-356-7102
- Recruiting
Mayo Clinic Florida
Jacksonville, Florida, 32224
Charles D. Burger, 904-953-4374, burger.charles@mayo.edu
Kristine Gundian, CRC, gundian.kristine@mayo.edu
- Recruiting
Ochsner Medical Center
Jefferson, Louisiana, 70121
Stacy Mandras, MD, 504-842-4721, smandras@ochsner.org
Angela Penning, 504-703-5612, angela.penning@ochsner.org
- Recruiting
KU Medical Center
Kansas City, Kansas, 66160
Timothy Williamson, MD, 913-588-6046, twillia1@kumc.edu
Timothy Williamson, MD
- Recruiting
Ft. Sanders Regional Medical Center
Knoxville, Tennessee, 37916
John Swisher, MD, PhD, 865-588-8831
Regina Overton-Barnes, APN, rbarnes@statcaremed.net
- Recruiting
Kentuckiana Pulmonary Associates
Louisville, Kentucky, 40202
Wesley McConnell, MD, 502-587-8000
Martha Royse, APRN, 502-587-8000
- Recruiting
University of Wisconsin Hospital and Clinics
Madison, Wisconsin, 53792
James R. Runo, MD, 608-263-7203, jrr@medicine.wisc.edu
Amy Chybowski, NP, 608-263-6400, amy.chybowski@uwmf.wisc.edu
- Recruiting
Aurora St. Luke's Medical Center
Milwaukee, Wisconsin, 53215
Dianne L. Zwicke, MD, 414-646-2438
Michelle Cicona, 414-646-0424, michelle.cicona@aurora.org
- Recruiting
Froedtert & Medical College of Wisconsin
Milwaukee, Wisconsin, 53226
Kenneth W. Presberg, MD, 414-955-7032, kpresber@mcw.edu
Amy Kimber, APNP, 414-955-7033, akimber@mcw.edu
- Recruiting
University of Minnesota Health
Minneapolis, Minnesota, 55455
Thenappan Thenappan, MD, 612-365-5000, tthenapp@umn.edu
Gretchen Piechel, gpeichel@umn.edu
- Recruiting
Vanderbilt Children's Hospital
Nashville, Tennessee, 37232
Eric D. Austin, MD, MSc, 615-875-6901, eric.austin@vumc.org
Karen Chaffin, NP, 615-936-2233, karen.e.chaffin@vumc.org
- Recruiting
Vanderbilt University Medical Center
Nashville, Tennessee, 37232
Anna R. Hemnes, MD, 615-322-3412, anna.r.hemnes@vumc.org
Anna R. Hemnes, MD
- Recruiting
LSU Healthcare Network Clinic
New Orleans, Louisiana, 70115
Matthew Lammi, MD, 504-412-1517, mlammi@lsuhsc.edu
Paula Lauto, RN, 504-568-3451, plauto@lsuhsc.edu
- Recruiting
Weill Cornell Medical Center
New York, New York, 10021
Evelyn M. Horn, MD, 646-962-5555, horneve@med.cornell.edu
Rosemarie Gadioma, 646-962-5555, gadioma@nyp.org
- Recruiting
Columbia University Medical Center/NewYork-Presbyterian Hospital
New York, New York, 10032
Erika S. Berman Rosenzweig, MD, 212-305-4436, esb14@cumc.columbia.edu
Daniela Brady, FNP, 212-305-4436, dm2069@cumc.columbia.edu
- Recruiting
Sentara Heart Hospital
Norfolk, Virginia, 23507
Michael S. Eggert, MD, 757-388-2831
Melinda Bullivant, MSN, RN, CCRC, 757-388-4024, mmbulliv@sentara.com
- Recruiting
University of Pennsylvania
Philadelphia, Pennsylvania, 19104
Steven M. Kawut, MD, MS, 800-789-7366, kawut@upenn.edu
Randi Goodman, 215-294-9758, randi.goodman@pennmedicine.upenn.edu
- Recruiting
Arizona Pulmonary Specialists, Ltd.
Phoenix, Arizona, 85012
Jeremy Feldman, MD, 602-274-7195
Jeremy Feldman, MD
- Recruiting
Allegheny General Hospital
Pittsburgh, Pennsylvania, 15212
Amresh Raina, MD, 412-359-3551, amresh.raina@ahn.org
Kimberly Curry, RN, 412-359-4608, kimberly.curry@ahn.org
- Recruiting
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, 15213
Marc A. Simon, MD, MS, 412-802-3131, simonma@upmc.edu
Abby Sung, 412-648-6024, sunga3@upmc.edu
- Recruiting
Baylor Scott & White
Plano, Texas, 75093
Sahil Bakshi, MD, 469-814-3897, sahil.bakshi@bswhealth.org
Lucy Knight, 469-814-4727, lucy.knight@bswhealth.org
- Recruiting
The Oregon Clinic
Portland, Oregon, 97225
Jeffrey C. Robinson, MD, 503-297-3778, jerobinson@orclinic.com
Stephanie Persons, BS, 503-963-3093, spersons@orclinic.com
- Recruiting
Rhode Island Hospital
Providence, Rhode Island, 02903
Corey E. Ventetuolo, MD, MS, 401-444-0008, corey_ventetuolo@brown.edu
Amy Palmisciano, BSN, 401-444-4961, apalmisciano@lifespan.org
- Recruiting
VCU Medical Center
Richmond, Virginia, 23298
Daniel Grinnan, MD, 800-828-9000, daniel.grinnan@vcuhealth.org
Charnetta Lester, 804-828-9000, charnetta.robinson@vcuhealth.org
- Recruiting
Mayo Clinic
Rochester, Minnesota, 55905
Robert P. Frantz, MD, 507-538-3270, frantz.robert@mayo.edu
Tonya Sands, 507-538-7297
- Recruiting
University of Rochester Medical Center
Rochester, New York, 14642-0001
R. James White, MD, PhD, 585-486-0869, jim_white@urmc.rochester.edu
Allison Light-Mills, PhD, 585-486-0869, allison_light@urmc.rochester.edu
- Recruiting
UC Davis Health
Sacramento, California, 95816
Nikhil Jaha, 916-734-1554, nkjaha@ucdavis.edu
Cynthia Perry-Baker, 916-734-1554, clpbaker@ucdavis.edu
- Recruiting
University of Utah Health
Salt Lake City, Utah, 84132
John J. Ryan, MD, 801-585-7676, john.ryan@hsc.utah.edu
Brittany Penn, 801-585-2469, brittany.penn@hsc.utah.edu
- Recruiting
UCSF Medical Center
San Francisco, California, 94143
Teresa De Marco, MD, 415-353-9088, teresa.demarco@ucsf.edu
Amanda Schnell Heringer, RN, CNS, 415-353-9088, amanda.schnellheringer@ucsf.edu
- Recruiting
UCSF Benioff Children's Hospital
San Francisco, California, 94158
Jeffrey Fineman, MD, 415-476-3679, jeff.fineman@ucsf.edu
Jasmine Becerra, 415-476-2649, jasmine.becerra@ucsf.edu
- Recruiting
Cottage Health System - Santa Barbara Pulmonary Associates
Santa Barbara, California, 93105
Jeffrey S. Sager, MD, MS, 805-898-8840, jsager@sblung.com
Caitlin Torchia, RN, 805-569-8993, ctorchia@sbch.org
- Recruiting
Seattle Children's Hospital
Seattle, Washington, 98105
Delphine Yung, MD, delphine.yung@seattlechildrens.org
Anne Davis, RN, anne.davis@seattlechildrens.org
- Recruiting
University of Washington
Seattle, Washington, 98195
Peter Leary, MD, PhD, 206-685-2484, learyp@uw.edu
Genecelle Delossantos, 206-543-8334, gen7@medicine.washington.edu
- Recruiting
Washington University in St. Louis
St Louis, Missouri, 63110
Murali M. Chakinala, MD, 314-454-8917, chakinalam@wustl.edu
Ellen Newton-Lovato, RN, 314-454-8717, elovato@wustl.edu
- Recruiting
Stanford University
Stanford, California, 94305
Doris Stanley, BS, 650-736-3678, dstandley@stanford.edu
Patricia Del Rosario, RN, 650-721-2408, pdelrosa@stanford.edu
About this study
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
- Medical subject headings
- Pulmonary Arterial Hypertension, Hypertension, Pulmonary
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 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 being measured
The primary outcome is the main question the study is designed to answer.
Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics
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"
Measured: 10 years
Impact of clinical predictors of disease worsening on patient outcomes
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.
Measured: 10 years
Survival
Measured: 10 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted28 Aug 2019
- Study startOct 2015
- Primary completionDec 2025 (estimated)
- Study completionDec 2025 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (12)Papers the sponsor has linked to this study.
- Other trials for Pulmonary Arterial HypertensionStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 3,000 participants (estimated)
- Target duration
- 10 Years
Sponsor and investigators
- Lead sponsor
- Pulmonary Hypertension Association, Inc.
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04071327
- Sponsor's protocol ID
- PHAR
- Acronym
- PHAR
- Status last verified
- Nov 2025
- First submitted
- 4 Apr 2019
- Last updated
- 14 Nov 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes
Publications
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.
PubMed 29074534Tang 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.
PubMed 32088984Jellis 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.
PubMed 34097027Hemnes 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.
PubMed 35953136Frantz 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.
PubMed 36618713Martens 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.
PubMed 36879444Simpson 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.
PubMed 37335853Naranjo 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.
PubMed 37614830Simpson 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.
PubMed 37786941Lowery 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.
PubMed 37968017Rischard 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.
PubMed 37664964McCormick 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.
PubMed 36787969
Study at a glance
From the registry record, last updated by the sponsor on 14 Nov 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Pulmonary Hypertension Association Registry
- ClinicalTrials.gov ID
- NCT04071327
- Acronym / sponsor ID
- PHAR / PHAR
- Conditions
- Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 3,000 participants (estimated)
- Lead sponsor
- Pulmonary Hypertension Association, Inc.University, hospital or other
- Study start
- Oct 2015 (actual)
- Primary completion
- Dec 2025 (estimated)
- Study completion
- Dec 2025 (estimated)
- First posted
- 28 Aug 2019 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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 design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 10 Years
- Number of arms
- 3
| Arm | Type | Receives |
|---|---|---|
| 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. |
Who may qualify
- Ages
- 0 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- 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.
Key inclusion criteria (4 listed)
- 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
Key exclusion criteria (3 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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"
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.
Survival
Time frame: 10 years
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 14 Nov 2025.
- Background: PubMed 29074534Hemnes 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.
- Background: PubMed 32088984Tang 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.
- Background: PubMed 34097027Jellis 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.
- Background: PubMed 35953136Hemnes 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.
- Background: PubMed 36618713Frantz 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.
- Background: PubMed 36879444Martens 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.
- Background: PubMed 37335853Simpson 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.
- Background: PubMed 37614830Naranjo 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.
- Background: PubMed 37786941Simpson 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.
- Background: PubMed 37968017Lowery 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.
- Background: PubMed 37664964Rischard 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.
- Derived from this study: PubMed 36787969McCormick 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 InfoLink provided by the sponsor.
- Individual participant dataSharing planned: Yes
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
52 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension, run by Pulmonary Hypertension Association, Inc. at 52 sites in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 14 Nov 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 52 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Elizabeth Joseloff, PhD (301-565-3004 ext. 759, PHAR@PHAssociation.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics (time frame: 10 years). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT04071327, which also lists 12 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 14 Nov 2025.