Recruiting

Observational StudyPulmonary Hypertension Association Registry

Sponsor:

Pulmonary Hypertension Association, Inc.

Code:

NCT04071327

Conditions

Pulmonary Arterial Hypertension

Chronic Thromboembolic Pulmonary Hypertension

Pulmonary Hypertension

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief 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 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

Study ID

NCT04071327

Start date

Oct, 2015

Status verified date

Nov, 2025

Completion date

Dec, 2025

Anticipated

Primary completion date

Dec, 2025

Anticipated

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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 Design

Enrollment

3000 participants

Anticipated

Interventions and Outcome Measures

Arms

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.

Primary outcome measure

Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics [ Time Frame: 10 years ]
Impact of clinical predictors of disease worsening on patient outcomes [ Time Frame: 10 years ]
Survival [ Time Frame: 10 years ]

Central Contacts and Locations

Central contacts

Elizabeth Joseloff, PhD

301-565-3004 PHAR@PHAssociation.org

Charles D Burger, MD

904-953-2000 burger.charles@mayo.edu

Locations

Arizona Pulmonary Specialists, Ltd.

Recruiting

Phoenix, Arizona, United States, 85012

Contacts

Jeremy Feldman, MD

602-274-7195

Principal Investigator:

Jeremy Feldman, MD

UC Davis Health

Recruiting

Sacramento, California, United States, 95816

Contacts

Nikhil Jaha

916-734-1554 nkjaha@ucdavis.edu

Cynthia Perry-Baker

916-734-1554 clpbaker@ucdavis.edu

Principal Investigator:

Roblee P. Allen, MD

UCSF Medical Center

Recruiting

San Francisco, California, United States, 94143

Contacts

Teresa De Marco, MD

415-353-9088 teresa.demarco@ucsf.edu

Amanda Schnell Heringer, RN, CNS

415-353-9088 amanda.schnellheringer@ucsf.edu

Principal Investigator:

Teresa De Marco, MD

UCSF Benioff Children's Hospital

Recruiting

San Francisco, California, United States, 94158

Contacts

Jeffrey Fineman, MD

415-476-3679 jeff.fineman@ucsf.edu

Jasmine Becerra

415-476-2649 jasmine.becerra@ucsf.edu

Principal Investigator:

Jeffrey Fineman, MD

Cottage Health System - Santa Barbara Pulmonary Associates

Recruiting

Santa Barbara, California, United States, 93105

Contacts

Jeffrey S. Sager, MD, MS

805-898-8840 jsager@sblung.com

Caitlin Torchia, RN

805-569-8993 ctorchia@sbch.org

Principal Investigator:

Jeffrey S. Sager, MD, MS

Stanford University

Recruiting

Stanford, California, United States, 94305

Contacts

Doris Stanley, BS

650-736-3678 dstandley@stanford.edu

Patricia Del Rosario, RN

650-721-2408 pdelrosa@stanford.edu

Principal Investigator:

Roham T. Zamanian, MD

Children's Hospital Colorado

Recruiting

Aurora, Colorado, United States, 80045

Contacts

Dunbar Ivy, MD

720-777-6820 dunbar.ivy@childrenscolorado.org

Kathleen Miller-Reed

720-777-6427 kathleen.miller-reed@childrenscolorado.org

Principal Investigator:

Dunbar Ivy, MD

UC Health - Anschutz Medical Campus

Recruiting

Aurora, Colorado, United States, 80045

Contacts

David Badesch, MD

303-880-8808 david.badesch@cuanschutz.edu

Kelly Hannon, RN

720-848-6518 kelly.hannon@cuanschutz.edu

Principal Investigator:

David Badesch, MD

University of Connecticut Health

Recruiting

Farmington, Connecticut, United States, 06030

Contacts

Raymond Foley, DO

860-679-3585 r.foley@uchc.edu

Principal Investigator:

Raymond Foley, DO

Mayo Clinic Florida

Recruiting

Jacksonville, Florida, United States, 32224

Contacts

Charles D. Burger

904-953-4374 burger.charles@mayo.edu

Kristine Gundian, CRC

gundian.kristine@mayo.edu

Principal Investigator:

Charles D. Burger, MD

Northside Hospital

Recruiting

Atlanta, Georgia, United States, 30342

Contacts

Paul Boyce, MD, MPH

404-257-0006 paul.boyce@northside.com

Tamara Wakhisi

404-236-8322 tamara.wakhisi@northside.com

Principal Investigator:

Paul Boyce, MD, MPH

University of Iowa Hospitals & Clinic

Recruiting

Iowa City, Iowa, United States, 52242

Contacts

Linda M. Cadaret, MD

319-356-7102

Paige Scovel

319-356-7102

Principal Investigator:

Linda M. Cadaret, MD

KU Medical Center

Recruiting

Kansas City, Kansas, United States, 66160

Contacts

Timothy Williamson, MD

913-588-6046 twillia1@kumc.edu

Principal Investigator:

Timothy Williamson, MD

Kentuckiana Pulmonary Associates

Recruiting

Louisville, Kentucky, United States, 40202

Contacts

Wesley McConnell, MD

502-587-8000

Martha Royse, APRN

502-587-8000

Principal Investigator:

Wesley McConnell, MD

Ochsner Medical Center

Recruiting

Jefferson, Louisiana, United States, 70121

Contacts

Stacy Mandras, MD

504-842-4721 smandras@ochsner.org

Angela Penning

504-703-5612 angela.penning@ochsner.org

Principal Investigator:

Stacy Mandras, MD

LSU Healthcare Network Clinic

Recruiting

New Orleans, Louisiana, United States, 70115

Contacts

Matthew Lammi, MD

504-412-1517 mlammi@lsuhsc.edu

Paula Lauto, RN

504-568-3451 plauto@lsuhsc.edu

Principal Investigator:

Matthew Lammi, MD

University of MD Medical Group, PA

Recruiting

Baltimore, Maryland, United States, 21201

Contacts

Gautam V. Ramani, MD

410-328-7260 gramani@som.umaryland.edu

Lioubov Poliokova

lpoliako@som.umaryland.edu

Principal Investigator:

Gautam V. Ramani, MD

Johns Hopkins University

Recruiting

Baltimore, Maryland, United States, 21287

Contacts

Stephen C. Mathai, MD, MHS

410-614-6311 smathai4@jhmi.edu

Julie Shamberger, RN

410-614-6311 jshambe2@jhmi.edu

Principal Investigator:

Stephen C. Mathai, MD, MHS

Henry Ford Hospital

Recruiting

Detroit, Michigan, United States, 48202

Contacts

Rana L. Awdish, MD

313-916-3757 rawdish1@hfhs.org

Sheri Renaud, RN

313-916-3757 srenaud9@hfhs.org

Principal Investigator:

Rana L. Awdish, MD

University of Minnesota Health

Recruiting

Minneapolis, Minnesota, United States, 55455

Contacts

Thenappan Thenappan, MD

612-365-5000 tthenapp@umn.edu

Gretchen Piechel

gpeichel@umn.edu

Principal Investigator:

Thenappan Thenappan, MD

Mayo Clinic

Recruiting

Rochester, Minnesota, United States, 55905

Contacts

Robert P. Frantz, MD

507-538-3270 frantz.robert@mayo.edu

Tonya Sands

507-538-7297

Principal Investigator:

Robert P. Frantz, MD

Washington University in St. Louis

Recruiting

St Louis, Missouri, United States, 63110

Contacts

Murali M. Chakinala, MD

314-454-8917 chakinalam@wustl.edu

Ellen Newton-Lovato, RN

314-454-8717 elovato@wustl.edu

Principal Investigator:

Murali M. Chakinala, MD

Weill Cornell Medical Center

Recruiting

New York, New York, United States, 10021

Contacts

Evelyn M. Horn, MD

646-962-5555 horneve@med.cornell.edu

Rosemarie Gadioma

646-962-5555 gadioma@nyp.org

Principal Investigator:

Evelyn M. Horn, MD

Columbia University Medical Center/NewYork-Presbyterian Hospital

Recruiting

New York, New York, United States, 10032

Contacts

Erika S. Berman Rosenzweig, MD

212-305-4436 esb14@cumc.columbia.edu

Daniela Brady, FNP

212-305-4436 dm2069@cumc.columbia.edu

Principal Investigator:

Erika S. Berman Rosenzweig, MD

University of Rochester Medical Center

Recruiting

Rochester, New York, United States, 14642-0001

Contacts

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

Principal Investigator:

R. James White, MD, PhD

UNC Chapel Hill

Recruiting

Chapel Hill, North Carolina, United States, 27517

Contacts

H. James Ford, MD

919-966-2531 hjford@med.unc.edu

Laura Nowicki, RN

919-843-7871 laura_nowicki@med.unc.edu

Principal Investigator:

H. James Ford, MD

Duke University Medical Center

Recruiting

Durham, North Carolina, United States, 27710

Contacts

Kishan Parikh, MD

kishan.parikh@duke.edu

Noely Martinez-Overby, CMA

noely.martinez-overby@duke.edu

Principal Investigator:

Kishan Parikh, MD

Cincinnati Children's Hospital

Recruiting

Cincinnati, Ohio, United States, 45229

Contacts

Russel Hirsch, MD

513-636-7072 russel.hirsch@cchmc.org

Alyssa Rhode, BS

513-636-7072 alyssa.rhode@cchmc.org

Principal Investigator:

Russel Hirsch, MD

UC Health

Recruiting

Cincinnati, Ohio, United States, 45267

Contacts

Jean M. Elwing, MD

513-475-8523 elwingj@ucmail.uc.edu

Jennifer Gilkison, RN, BSN

513-475-8523 gilkisjr@ucmail.uc.edu

Principal Investigator:

Jean M. Elwing, MD

The Oregon Clinic

Recruiting

Portland, Oregon, United States, 97225

Contacts

Jeffrey C. Robinson, MD

503-297-3778 jerobinson@orclinic.com

Stephanie Persons, BS

503-963-3093 spersons@orclinic.com

Principal Investigator:

Jeffrey C. Robinson, MD

University of Pennsylvania

Recruiting

Philadelphia, Pennsylvania, United States, 19104

Contacts

Steven M. Kawut, MD, MS

800-789-7366 kawut@upenn.edu

Randi Goodman

215-294-9758 randi.goodman@pennmedicine.upenn.edu

Principal Investigator:

Steven M. Kawut, MD, MS

Allegheny General Hospital

Recruiting

Pittsburgh, Pennsylvania, United States, 15212

Contacts

Amresh Raina, MD

412-359-3551 amresh.raina@ahn.org

Kimberly Curry, RN

412-359-4608 kimberly.curry@ahn.org

Principal Investigator:

Amresh Raina, MD

University of Pittsburgh Medical Center

Recruiting

Pittsburgh, Pennsylvania, United States, 15213

Contacts

Marc A. Simon, MD, MS

412-802-3131 simonma@upmc.edu

Abby Sung

412-648-6024 sunga3@upmc.edu

Principal Investigator:

Marc A. Simon, MD, MS

Rhode Island Hospital

Recruiting

Providence, Rhode Island, United States, 02903

Contacts

Corey E. Ventetuolo, MD, MS

401-444-0008 corey_ventetuolo@brown.edu

Amy Palmisciano, BSN

401-444-4961 apalmisciano@lifespan.org

Principal Investigator:

Corey E. Ventetuolo, MD, MS

AnMed Health

Recruiting

Anderson, South Carolina, United States, 29621

Contacts

Abhijit Raval, MD

864-225-5667 drravallung@gmail.com

Kelly Dickson, RRT

864-512-6625 kelly.dickson@anmedhealth.org

Principal Investigator:

Abhijit Raval, MD

Ft. Sanders Regional Medical Center

Recruiting

Knoxville, Tennessee, United States, 37916

Contacts

John Swisher, MD, PhD

865-588-8831

Regina Overton-Barnes, APN

rbarnes@statcaremed.net

Principal Investigator:

John Swisher, MD, PhD

Vanderbilt Children's Hospital

Recruiting

Nashville, Tennessee, United States, 37232

Contacts

Eric D. Austin, MD, MSc

615-875-6901 eric.austin@vumc.org

Karen Chaffin, NP

615-936-2233 karen.e.chaffin@vumc.org

Principal Investigator:

Eric D. Austin, MD

Vanderbilt University Medical Center

Recruiting

Nashville, Tennessee, United States, 37232

Contacts

Anna R. Hemnes, MD

615-322-3412 anna.r.hemnes@vumc.org

Principal Investigator:

Anna R. Hemnes, MD

UT Southwestern Medical Center

Recruiting

Dallas, Texas, United States, 75390

Contacts

Sonja D. Bartolome, MD

214-645-5505 sonja.bartolome@utsouthwestern.edu

Balaji Kolasani

214-645-1295 balaji.kolasani@utsouthwestern.edu

Principal Investigator:

Sonja D. Bartolome, MD

Texas Children's Hospital

Recruiting

Houston, Texas, United States, 77030

Contacts

Nidhy Varghese, MD

832-822-3300 npvarghe@texaschildrens.com

Elise Whalen, MSN

832-822-1879 ecbockov@texaschildrens.com

Principal Investigator:

Nidhy Varghese, MD

Baylor Scott & White

Recruiting

Plano, Texas, United States, 75093

Contacts

Sahil Bakshi, MD

469-814-3897 sahil.bakshi@bswhealth.org

Lucy Knight

469-814-4727 lucy.knight@bswhealth.org

Principal Investigator:

Sahil Bakshi, MD

University of Utah Health

Recruiting

Salt Lake City, Utah, United States, 84132

Contacts

John J. Ryan, MD

801-585-7676 john.ryan@hsc.utah.edu

Brittany Penn

801-585-2469 brittany.penn@hsc.utah.edu

Principal Investigator:

John J. Ryan, MD

University of Virginia

Recruiting

Charlottesville, Virginia, United States, 22908

Contacts

Sula Mazimba, MD

434-982-1058 sm8sd@hscmail.mcc.virginia.edu

Allison Raymond, RN, CCRC

434-982-1058 AEH4M@hscmail.mcc.virginia.edu

Principal Investigator:

Sula Mazimba, MD

Inova Fairfax Hospital

Recruiting

Falls Church, Virginia, United States, 22042

Contacts

Oksana A. Shlobin, MD

703-776-2986 oksana.shlobin@inova.org

Edwinia Battle, BSN, CCRC

703-776-3067 edwinia.battle@inova.org

Principal Investigator:

Oksana A. Shlobin, MD

Sentara Heart Hospital

Recruiting

Norfolk, Virginia, United States, 23507

Contacts

Michael S. Eggert, MD

757-388-2831

Melinda Bullivant, MSN, RN, CCRC

757-388-4024 mmbulliv@sentara.com

Principal Investigator:

Michael S. Eggert, MD

VCU Medical Center

Recruiting

Richmond, Virginia, United States, 23298

Contacts

Daniel Grinnan, MD

800-828-9000 daniel.grinnan@vcuhealth.org

Charnetta Lester

804-828-9000 charnetta.robinson@vcuhealth.org

Principal Investigator:

Daniel Grinnan, MD

Seattle Children's Hospital

Recruiting

Seattle, Washington, United States, 98105

Contacts

Delphine Yung, MD

delphine.yung@seattlechildrens.org

Anne Davis, RN

anne.davis@seattlechildrens.org

Principal Investigator:

Delphine Yung, MD

University of Washington

Recruiting

Seattle, Washington, United States, 98195

Contacts

Peter Leary, MD, PhD

206-685-2484 learyp@uw.edu

Genecelle Delossantos

206-543-8334 gen7@medicine.washington.edu

Principal Investigator:

Peter Leary, MD, PhD

University of Wisconsin Hospital and Clinics

Recruiting

Madison, Wisconsin, United States, 53792

Contacts

James R. Runo, MD

608-263-7203 jrr@medicine.wisc.edu

Amy Chybowski, NP

608-263-6400 amy.chybowski@uwmf.wisc.edu

Principal Investigator:

James R. Runo, MD

Aurora St. Luke's Medical Center

Recruiting

Milwaukee, Wisconsin, United States, 53215

Contacts

Dianne L. Zwicke, MD

414-646-2438

Michelle Cicona

414-646-0424 michelle.cicona@aurora.org

Principal Investigator:

Dianne L. Zwicke, MD

Froedtert & Medical College of Wisconsin

Recruiting

Milwaukee, Wisconsin, United States, 53226

Contacts

Kenneth W. Presberg, MD

414-955-7032 kpresber@mcw.edu

Amy Kimber, APNP

414-955-7033 akimber@mcw.edu

Principal Investigator:

Kenneth W. Presberg, MD

More Information

Sponsor

Pulmonary Hypertension Association, Inc.

Last update posted

Nov 14, 2025

Last verified

Nov, 2025

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-08. This information was provided to ClinicalTrials.gov by Pulmonary Hypertension Association, Inc. on 2025-11-14.