Pulmonary Hypertension Association Registry (PHAR)
November 13, 2025 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
Study Type
Observational
Enrollment (Estimated)
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
- Name: Elizabeth Joseloff, PhD
- Phone Number: 759 301-565-3004
- Email: PHAR@PHAssociation.org
Study Contact Backup
- Name: Charles D Burger, MD
- Phone Number: 904-953-2000 904-953-2000
- Email: burger.charles@mayo.edu
Study Locations
-
-
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:
- Cynthia Perry-Baker
- Phone Number: 916-734-1554
- Email: clpbaker@ucdavis.edu
-
Contact:
- Nikhil Jaha
- Phone Number: 916-734-1554
- Email: nkjaha@ucdavis.edu
-
Principal Investigator:
- Roblee P. Allen, MD
-
San Francisco, California, United States, 94143
- Recruiting
- UCSF Medical Center
-
Contact:
- Teresa De Marco, MD
- Phone Number: 415-353-9088
- Email: teresa.demarco@ucsf.edu
-
Contact:
- Amanda Schnell Heringer, RN, CNS
- Phone Number: 415-353-9088
- Email: amanda.schnellheringer@ucsf.edu
-
Principal Investigator:
- Teresa De Marco, MD
-
San Francisco, California, United States, 94158
- Recruiting
- UCSF Benioff Children's Hospital
-
Contact:
- Jeffrey Fineman, MD
- Phone Number: 415-476-3679
- Email: jeff.fineman@ucsf.edu
-
Contact:
- Jasmine Becerra
- Phone Number: 415-476-2649
- Email: jasmine.becerra@ucsf.edu
-
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:
- Jeffrey S. Sager, MD, MS
- Phone Number: 805-898-8840
- Email: jsager@sblung.com
-
Contact:
- Caitlin Torchia, RN
- Phone Number: 805-569-8993
- Email: ctorchia@sbch.org
-
Principal Investigator:
- Jeffrey S. Sager, MD, MS
-
Sub-Investigator:
- Richard A. Belkin, MD, MS
-
Stanford, California, United States, 94305
- Recruiting
- Stanford University
-
Contact:
- Doris Stanley, BS
- Phone Number: 650-736-3678
- Email: dstandley@stanford.edu
-
Contact:
- Patricia Del Rosario, RN
- Phone Number: 650-721-2408
- Email: pdelrosa@stanford.edu
-
Principal Investigator:
- Roham T. Zamanian, MD
-
-
Colorado
-
Aurora, Colorado, United States, 80045
- Recruiting
- Children's Hospital Colorado
-
Contact:
- Dunbar Ivy, MD
- Phone Number: 720-777-6820
- Email: dunbar.ivy@childrenscolorado.org
-
Contact:
- Kathleen Miller-Reed
- Phone Number: 720-777-6427
- Email: kathleen.miller-reed@childrenscolorado.org
-
Principal Investigator:
- Dunbar Ivy, MD
-
Sub-Investigator:
- Benjamin Frank, MD
-
Aurora, Colorado, United States, 80045
- Recruiting
- UC Health - Anschutz Medical Campus
-
Contact:
- David Badesch, MD
- Phone Number: 303-880-8808
- Email: david.badesch@cuanschutz.edu
-
Contact:
- Kelly Hannon, RN
- Phone Number: 720-848-6518
- Email: kelly.hannon@cuanschutz.edu
-
Principal Investigator:
- David Badesch, MD
-
Principal Investigator:
- Todd M. Bull, MD
-
-
Connecticut
-
Farmington, Connecticut, United States, 06030
- Recruiting
- University of Connecticut Health
-
Contact:
- Raymond Foley, DO
- Phone Number: 860-679-3585
- Email: r.foley@uchc.edu
-
Principal Investigator:
- Raymond Foley, DO
-
-
Florida
-
Jacksonville, Florida, United States, 32224
- Recruiting
- Mayo Clinic Florida
-
Contact:
- Charles D. Burger
- Phone Number: 904-953-4374
- Email: burger.charles@mayo.edu
-
Contact:
- Kristine Gundian, CRC
- Email: gundian.kristine@mayo.edu
-
Principal Investigator:
- Charles D. Burger, MD
-
Sub-Investigator:
- John E. Moss, MD
-
-
Georgia
-
Atlanta, Georgia, United States, 30342
- Recruiting
- Northside Hospital
-
Contact:
- Tamara Wakhisi
- Phone Number: 404-236-8322
- Email: tamara.wakhisi@northside.com
-
Contact:
- Paul Boyce, MD, MPH
- Phone Number: 404-257-0006
- Email: paul.boyce@northside.com
-
Principal Investigator:
- Paul Boyce, MD, MPH
-
-
Indiana
-
Indianapolis, Indiana, United States, 46202
- Not yet recruiting
- Indiana University Health
-
Contact:
- Michael Duncan, MD
- Phone Number: 317-962-9700
- Email: mduncan3@iuhealth.org
-
Contact:
- Melissa Astin, BSN
- Phone Number: 317-962-2072
- Email: mastin@iuhealth.org
-
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:
- Timothy Williamson, MD
- Phone Number: 913-588-6046
- Email: twillia1@kumc.edu
-
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:
- Stacy Mandras, MD
- Phone Number: 504-842-4721
- Email: smandras@ochsner.org
-
Contact:
- Angela Penning
- Phone Number: 504-703-5612
- Email: angela.penning@ochsner.org
-
Principal Investigator:
- Stacy Mandras, MD
-
New Orleans, Louisiana, United States, 70115
- Recruiting
- LSU Healthcare Network Clinic
-
Contact:
- Matthew Lammi, MD
- Phone Number: 504-412-1517
- Email: mlammi@lsuhsc.edu
-
Contact:
- Paula Lauto, RN
- Phone Number: 504-568-3451
- Email: plauto@lsuhsc.edu
-
Principal Investigator:
- Matthew Lammi, MD
-
Principal Investigator:
- Bennett deBoisblanc, MD
-
-
Maryland
-
Baltimore, Maryland, United States, 21287
- Recruiting
- Johns Hopkins University
-
Contact:
- Stephen C. Mathai, MD, MHS
- Phone Number: 410-614-6311
- Email: smathai4@jhmi.edu
-
Contact:
- Julie Shamberger, RN
- Phone Number: 410-614-6311
- Email: jshambe2@jhmi.edu
-
Principal Investigator:
- Stephen C. Mathai, MD, MHS
-
Principal Investigator:
- Paul M. Hassoun, MD
-
Baltimore, Maryland, United States, 21201
- Recruiting
- University of MD Medical Group, PA
-
Contact:
- Gautam V. Ramani, MD
- Phone Number: 410-328-7260
- Email: gramani@som.umaryland.edu
-
Contact:
- Lioubov Poliokova
- Email: lpoliako@som.umaryland.edu
-
Principal Investigator:
- Gautam V. Ramani, MD
-
-
Michigan
-
Detroit, Michigan, United States, 48202
- Recruiting
- Henry Ford Hospital
-
Contact:
- Rana L. Awdish, MD
- Phone Number: 313-916-3757
- Email: rawdish1@hfhs.org
-
Contact:
- Sheri Renaud, RN
- Phone Number: 313-916-3757
- Email: srenaud9@hfhs.org
-
Principal Investigator:
- Rana L. Awdish, MD
-
Sub-Investigator:
- Sara Hegab, MD
-
-
Minnesota
-
Minneapolis, Minnesota, United States, 55455
- Recruiting
- University of Minnesota Health
-
Contact:
- Thenappan Thenappan, MD
- Phone Number: 612-365-5000
- Email: tthenapp@umn.edu
-
Contact:
- Gretchen Piechel
- Email: gpeichel@umn.edu
-
Principal Investigator:
- Thenappan Thenappan, MD
-
Sub-Investigator:
- Marc Pritzker, MD
-
Sub-Investigator:
- Kurt Prins, MD
-
Rochester, Minnesota, United States, 55905
- Recruiting
- Mayo Clinic
-
Contact:
- Robert P. Frantz, MD
- Phone Number: 507-538-3270
- Email: frantz.robert@mayo.edu
-
Contact:
- Tonya Sands
- Phone Number: 507-538-7297
-
Principal Investigator:
- Robert P. Frantz, MD
-
-
Missouri
-
St Louis, Missouri, United States, 63110
- Recruiting
- Washington University in St. Louis
-
Contact:
- Murali M. Chakinala, MD
- Phone Number: 314-454-8917
- Email: chakinalam@wustl.edu
-
Contact:
- Ellen Newton-Lovato, RN
- Phone Number: 314-454-8717
- Email: elovato@wustl.edu
-
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:
- Evelyn M. Horn, MD
- Phone Number: 646-962-5555
- Email: horneve@med.cornell.edu
-
Contact:
- Rosemarie Gadioma
- Phone Number: 646-962-5555
- Email: gadioma@nyp.org
-
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:
- Erika S. Berman Rosenzweig, MD
- Phone Number: 212-305-4436
- Email: esb14@cumc.columbia.edu
-
Contact:
- Daniela Brady, FNP
- Phone Number: 212-305-4436
- Email: dm2069@cumc.columbia.edu
-
Principal Investigator:
- Erika S. Berman Rosenzweig, MD
-
Rochester, New York, United States, 14642-0001
- Recruiting
- University of Rochester Medical Center
-
Contact:
- R. James White, MD, PhD
- Phone Number: 585-486-0869
- Email: jim_white@urmc.rochester.edu
-
Contact:
- Allison Light-Mills, PhD
- Phone Number: 585-486-0869
- Email: allison_light@urmc.rochester.edu
-
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:
- H. James Ford, MD
- Phone Number: 919-966-2531
- Email: hjford@med.unc.edu
-
Contact:
- Laura Nowicki, RN
- Phone Number: 919-843-7871
- Email: laura_nowicki@med.unc.edu
-
Principal Investigator:
- H. James Ford, MD
-
Sub-Investigator:
- Barbara LeVarge, MD
-
Durham, North Carolina, United States, 27710
- Recruiting
- Duke University Medical Center
-
Contact:
- Kishan Parikh, MD
- Email: kishan.parikh@duke.edu
-
Contact:
- Noely Martinez-Overby, CMA
- Email: noely.martinez-overby@duke.edu
-
Principal Investigator:
- Kishan Parikh, MD
-
Principal Investigator:
- Terry Fortin, MD, MS
-
-
Ohio
-
Cincinnati, Ohio, United States, 45229
- Recruiting
- Cincinnati Children's Hospital
-
Contact:
- Russel Hirsch, MD
- Phone Number: 513-636-7072
- Email: russel.hirsch@cchmc.org
-
Contact:
- Alyssa Rhode, BS
- Phone Number: 513-636-7072
- Email: alyssa.rhode@cchmc.org
-
Principal Investigator:
- Russel Hirsch, MD
-
Cincinnati, Ohio, United States, 45267
- Recruiting
- UC Health
-
Contact:
- Jean M. Elwing, MD
- Phone Number: 513-475-8523
- Email: elwingj@ucmail.uc.edu
-
Contact:
- Jennifer Gilkison, RN, BSN
- Phone Number: 513-475-8523
- Email: gilkisjr@ucmail.uc.edu
-
Principal Investigator:
- Jean M. Elwing, MD
-
Sub-Investigator:
- Arun Jose, MD
-
-
Oregon
-
Portland, Oregon, United States, 97225
- Recruiting
- The Oregon Clinic
-
Contact:
- Jeffrey C. Robinson, MD
- Phone Number: 503-297-3778
- Email: jerobinson@orclinic.com
-
Contact:
- Stephanie Persons, BS
- Phone Number: 503-963-3093
- Email: spersons@orclinic.com
-
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:
- Randi Goodman
- Phone Number: 215-294-9758
- Email: randi.goodman@pennmedicine.upenn.edu
-
Principal Investigator:
- Steven M. Kawut, MD, MS
-
Pittsburgh, Pennsylvania, United States, 15213
- Recruiting
- University of Pittsburgh Medical Center
-
Contact:
- Marc A. Simon, MD, MS
- Phone Number: 412-802-3131
- Email: simonma@upmc.edu
-
Contact:
- Abby Sung
- Phone Number: 412-648-6024
- Email: sunga3@upmc.edu
-
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:
- Amresh Raina, MD
- Phone Number: 412-359-3551
- Email: amresh.raina@ahn.org
-
Contact:
- Kimberly Curry, RN
- Phone Number: 412-359-4608
- Email: kimberly.curry@ahn.org
-
Principal Investigator:
- Amresh Raina, MD
-
-
Rhode Island
-
Providence, Rhode Island, United States, 02903
- Recruiting
- Rhode Island Hospital
-
Contact:
- Corey E. Ventetuolo, MD, MS
- Phone Number: 401-444-0008
- Email: corey_ventetuolo@brown.edu
-
Contact:
- Amy Palmisciano, BSN
- Phone Number: 401-444-4961
- Email: apalmisciano@lifespan.org
-
Principal Investigator:
- Corey E. Ventetuolo, MD, MS
-
Principal Investigator:
- James R. Klinger, MD
-
-
South Carolina
-
Anderson, South Carolina, United States, 29621
- Recruiting
- AnMed Health
-
Principal Investigator:
- Abhijit Raval, MD
-
Contact:
- Abhijit Raval, MD
- Phone Number: 864-225-5667
- Email: drravallung@gmail.com
-
Contact:
- Kelly Dickson, RRT
- Phone Number: 864-512-6625
- Email: kelly.dickson@anmedhealth.org
-
-
Tennessee
-
Knoxville, Tennessee, United States, 37916
- Recruiting
- Ft. Sanders Regional Medical Center
-
Contact:
- John Swisher, MD, PhD
- Phone Number: 865-588-8831
-
Contact:
- Regina Overton-Barnes, APN
- Email: rbarnes@statcaremed.net
-
Principal Investigator:
- John Swisher, MD, PhD
-
Nashville, Tennessee, United States, 37232
- Recruiting
- Vanderbilt University Medical Center
-
Contact:
- Anna R. Hemnes, MD
- Phone Number: 615-322-3412
- Email: anna.r.hemnes@vumc.org
-
Principal Investigator:
- Anna R. Hemnes, MD
-
Nashville, Tennessee, United States, 37232
- Recruiting
- Vanderbilt Children's Hospital
-
Contact:
- Eric D. Austin, MD, MSc
- Phone Number: 615-875-6901
- Email: eric.austin@vumc.org
-
Contact:
- Karen Chaffin, NP
- Phone Number: 615-936-2233
- Email: karen.e.chaffin@vumc.org
-
Principal Investigator:
- Eric D. Austin, MD
-
-
Texas
-
Dallas, Texas, United States, 75390
- Recruiting
- UT Southwestern Medical Center
-
Contact:
- Sonja D. Bartolome, MD
- Phone Number: 214-645-5505
- Email: sonja.bartolome@utsouthwestern.edu
-
Contact:
- Balaji Kolasani
- Phone Number: 214-645-1295
- Email: balaji.kolasani@utsouthwestern.edu
-
Principal Investigator:
- Sonja D. Bartolome, MD
-
Houston, Texas, United States, 77030
- Recruiting
- Texas Children's Hospital
-
Contact:
- Nidhy Varghese, MD
- Phone Number: 832-822-3300
- Email: npvarghe@texaschildrens.com
-
Contact:
- Elise Whalen, MSN
- Phone Number: 832-822-1879
- Email: ecbockov@texaschildrens.com
-
Principal Investigator:
- Nidhy Varghese, MD
-
Plano, Texas, United States, 75093
- Recruiting
- Baylor Scott & White
-
Contact:
- Sahil Bakshi, MD
- Phone Number: 469-814-3897
- Email: sahil.bakshi@bswhealth.org
-
Contact:
- Lucy Knight
- Phone Number: 469-814-4727
- Email: lucy.knight@bswhealth.org
-
Principal Investigator:
- Sahil Bakshi, MD
-
Sub-Investigator:
- Adrian Felder
-
-
Utah
-
Salt Lake City, Utah, United States, 84132
- Recruiting
- University of Utah Health
-
Contact:
- John J. Ryan, MD
- Phone Number: 801-585-7676
- Email: john.ryan@hsc.utah.edu
-
Contact:
- Brittany Penn
- Phone Number: 801-585-2469
- Email: brittany.penn@hsc.utah.edu
-
Principal Investigator:
- John J. Ryan, MD
-
-
Virginia
-
Charlottesville, Virginia, United States, 22908
- Recruiting
- University of Virginia
-
Contact:
- Sula Mazimba, MD
- Phone Number: 434-982-1058
- Email: sm8sd@hscmail.mcc.virginia.edu
-
Contact:
- Allison Raymond, RN, CCRC
- Phone Number: 434-982-1058
- Email: AEH4M@hscmail.mcc.virginia.edu
-
Principal Investigator:
- Sula Mazimba, MD
-
Falls Church, Virginia, United States, 22042
- Recruiting
- Inova Fairfax Hospital
-
Contact:
- Oksana A. Shlobin, MD
- Phone Number: 703-776-2986
- Email: oksana.shlobin@inova.org
-
Contact:
- Edwinia Battle, BSN, CCRC
- Phone Number: 703-776-3067
- Email: edwinia.battle@inova.org
-
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:
- Melinda Bullivant, MSN, RN, CCRC
- Phone Number: 757-388-4024
- Email: mmbulliv@sentara.com
-
Principal Investigator:
- Michael S. Eggert, MD
-
Sub-Investigator:
- Vanessa Knowles, NP
-
Richmond, Virginia, United States, 23298
- Recruiting
- VCU Medical Center
-
Contact:
- Daniel Grinnan, MD
- Phone Number: 800-828-9000
- Email: daniel.grinnan@vcuhealth.org
-
Contact:
- Charnetta Lester
- Phone Number: 804-828-9000
- Email: charnetta.robinson@vcuhealth.org
-
Principal Investigator:
- Daniel Grinnan, MD
-
-
Washington
-
Seattle, Washington, United States, 98105
- Recruiting
- Seattle Children's Hospital
-
Contact:
- Delphine Yung, MD
- Email: delphine.yung@seattlechildrens.org
-
Contact:
- Anne Davis, RN
- Email: anne.davis@seattlechildrens.org
-
Principal Investigator:
- Delphine Yung, MD
-
Sub-Investigator:
- Emma Jackson, ARNP
-
Seattle, Washington, United States, 98195
- Recruiting
- University of Washington
-
Contact:
- Peter Leary, MD, PhD
- Phone Number: 206-685-2484
- Email: learyp@uw.edu
-
Contact:
- Genecelle Delossantos
- Phone Number: 206-543-8334
- Email: gen7@medicine.washington.edu
-
Principal Investigator:
- Peter Leary, MD, PhD
-
-
Wisconsin
-
Madison, Wisconsin, United States, 53792
- Recruiting
- University of Wisconsin Hospital and Clinics
-
Contact:
- James R. Runo, MD
- Phone Number: 608-263-7203
- Email: jrr@medicine.wisc.edu
-
Contact:
- Amy Chybowski, NP
- Phone Number: 608-263-6400
- Email: amy.chybowski@uwmf.wisc.edu
-
Principal Investigator:
- James R. Runo, MD
-
Sub-Investigator:
- Kara N. Goss, MD
-
Milwaukee, Wisconsin, United States, 53226
- Recruiting
- Froedtert & Medical College of Wisconsin
-
Contact:
- Kenneth W. Presberg, MD
- Phone Number: 414-955-7032
- Email: kpresber@mcw.edu
-
Contact:
- Amy Kimber, APNP
- Phone Number: 414-955-7033
- Email: akimber@mcw.edu
-
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:
- Michelle Cicona
- Phone Number: 414-646-0424
- Email: michelle.cicona@aurora.org
-
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
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.
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.
General 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.
- 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.
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 (Estimated)
December 1, 2025
Study Completion (Estimated)
December 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 (Estimated)
November 14, 2025
Last Update Submitted That Met QC Criteria
November 13, 2025
Last Verified
November 1, 2025
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
product manufactured in and exported from the U.S.
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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