Pulmonary Hypertension Association Registry

Study Purpose

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.

Recruitment Criteria

Accepts Healthy Volunteers

Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms

No
Study Type

An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes.


An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes.


Searching Both is inclusive of interventional and observational studies.

Observational [Patient Registry]
Eligible Ages N/A and Over
Gender All
More Inclusion & Exclusion Criteria

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

Trial Details

Trial ID:

This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.

NCT04071327
Phase

Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans.

Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data.

Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.

Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.

Lead Sponsor

The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.

Pulmonary Hypertension Association, Inc.
Principal Investigator

The person who is responsible for the scientific and technical direction of the entire clinical study.

Daniel Grinnan, MD
Principal Investigator Affiliation Virginia Commonwealth University
Agency Class

Category of organization(s) involved as sponsor (and collaborator) supporting the trial.

Other
Overall Status Recruiting
Countries United States
Conditions

The disease, disorder, syndrome, illness, or injury that is being studied.

Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension
Study Website: View Trial Website
Arms & Interventions

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.

Interventions

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.

Arizona Pulmonary Specialists, Ltd., Phoenix, Arizona

Status

Recruiting

Address

Arizona Pulmonary Specialists, Ltd.

Phoenix, Arizona, 85012

Site Contact

Jeremy Feldman, MD

PHAR@PHAssociation.org

602-274-7195

UC Davis Health, Sacramento, California

Status

Recruiting

Address

UC Davis Health

Sacramento, California, 95816

Site Contact

Nikhil Jaha

nkjaha@ucdavis.edu

916-734-1554

UCSF Medical Center, San Francisco, California

Status

Recruiting

Address

UCSF Medical Center

San Francisco, California, 94143

Site Contact

Teresa De Marco, MD

teresa.demarco@ucsf.edu

415-353-9088

UCSF Benioff Children's Hospital, San Francisco, California

Status

Recruiting

Address

UCSF Benioff Children's Hospital

San Francisco, California, 94158

Site Contact

Jeffrey Fineman, MD

jeff.fineman@ucsf.edu

415-476-3679

Santa Barbara, California

Status

Recruiting

Address

Cottage Health System - Santa Barbara Pulmonary Associates

Santa Barbara, California, 93105

Site Contact

Jeffrey S. Sager, MD, MS

jsager@sblung.com

805-898-8840

Stanford University, Stanford, California

Status

Recruiting

Address

Stanford University

Stanford, California, 94305

Site Contact

Doris Stanley, BS

dstandley@stanford.edu

650-736-3678

Children's Hospital Colorado, Aurora, Colorado

Status

Recruiting

Address

Children's Hospital Colorado

Aurora, Colorado, 80045

Site Contact

Dunbar Ivy, MD

dunbar.ivy@childrenscolorado.org

720-777-6820

UC Health - Anschutz Medical Campus, Aurora, Colorado

Status

Recruiting

Address

UC Health - Anschutz Medical Campus

Aurora, Colorado, 80045

Site Contact

David Badesch, MD

david.badesch@cuanschutz.edu

303-880-8808

University of Connecticut Health, Farmington, Connecticut

Status

Recruiting

Address

University of Connecticut Health

Farmington, Connecticut, 06030

Site Contact

Raymond Foley, DO

r.foley@uchc.edu

860-679-3585

Mayo Clinic Florida, Jacksonville, Florida

Status

Recruiting

Address

Mayo Clinic Florida

Jacksonville, Florida, 32224

Site Contact

Charles D. Burger

burger.charles@mayo.edu

904-953-4374

Northside Hospital, Atlanta, Georgia

Status

Recruiting

Address

Northside Hospital

Atlanta, Georgia, 30342

Site Contact

Paul Boyce, MD, MPH

paul.boyce@northside.com

404-257-0006

Indiana University Health, Indianapolis, Indiana

Status

Not yet recruiting

Address

Indiana University Health

Indianapolis, Indiana, 46202

Site Contact

Michael Duncan, MD

mduncan3@iuhealth.org

317-962-9700

University of Iowa Hospitals & Clinic, Iowa City, Iowa

Status

Recruiting

Address

University of Iowa Hospitals & Clinic

Iowa City, Iowa, 52242

Site Contact

Linda M. Cadaret, MD

PHAR@PHAssociation.org

319-356-7102

KU Medical Center, Kansas City, Kansas

Status

Recruiting

Address

KU Medical Center

Kansas City, Kansas, 66160

Site Contact

Timothy Williamson, MD

twillia1@kumc.edu

913-588-6046

Kentuckiana Pulmonary Associates, Louisville, Kentucky

Status

Recruiting

Address

Kentuckiana Pulmonary Associates

Louisville, Kentucky, 40202

Site Contact

Wesley McConnell, MD

PHAR@PHAssociation.org

502-587-8000

Ochsner Medical Center, Jefferson, Louisiana

Status

Recruiting

Address

Ochsner Medical Center

Jefferson, Louisiana, 70121

Site Contact

Stacy Mandras, MD

smandras@ochsner.org

504-842-4721

LSU Healthcare Network Clinic, New Orleans, Louisiana

Status

Recruiting

Address

LSU Healthcare Network Clinic

New Orleans, Louisiana, 70115

Site Contact

Matthew Lammi, MD

mlammi@lsuhsc.edu

504-412-1517

University of MD Medical Group, PA, Baltimore, Maryland

Status

Recruiting

Address

University of MD Medical Group, PA

Baltimore, Maryland, 21201

Site Contact

Gautam V. Ramani, MD

gramani@som.umaryland.edu

410-328-7260

Johns Hopkins University, Baltimore, Maryland

Status

Recruiting

Address

Johns Hopkins University

Baltimore, Maryland, 21287

Site Contact

Stephen C. Mathai, MD, MHS

smathai4@jhmi.edu

410-614-6311

Henry Ford Hospital, Detroit, Michigan

Status

Recruiting

Address

Henry Ford Hospital

Detroit, Michigan, 48202

Site Contact

Rana L. Awdish, MD

rawdish1@hfhs.org

313-916-3757

University of Minnesota Health, Minneapolis, Minnesota

Status

Recruiting

Address

University of Minnesota Health

Minneapolis, Minnesota, 55455

Site Contact

Thenappan Thenappan, MD

tthenapp@umn.edu

612-365-5000

Mayo Clinic, Rochester, Minnesota

Status

Recruiting

Address

Mayo Clinic

Rochester, Minnesota, 55905

Site Contact

Robert P. Frantz, MD

frantz.robert@mayo.edu

507-538-3270

Washington University in St. Louis, Saint Louis, Missouri

Status

Recruiting

Address

Washington University in St. Louis

Saint Louis, Missouri, 63110

Site Contact

Murali M. Chakinala, MD

chakinalam@wustl.edu

314-454-8917

Weill Cornell Medical Center, New York, New York

Status

Recruiting

Address

Weill Cornell Medical Center

New York, New York, 10021

Site Contact

Evelyn M. Horn, MD

horneve@med.cornell.edu

646-962-5555

New York, New York

Status

Recruiting

Address

Columbia University Medical Center/NewYork-Presbyterian Hospital

New York, New York, 10032

Site Contact

Erika S. Berman Rosenzweig, MD

esb14@cumc.columbia.edu

212-305-4436

University of Rochester Medical Center, Rochester, New York

Status

Recruiting

Address

University of Rochester Medical Center

Rochester, New York, 14642-0001

Site Contact

R. James White, MD, PhD

jim_white@urmc.rochester.edu

585-486-0869

UNC Chapel Hill, Chapel Hill, North Carolina

Status

Recruiting

Address

UNC Chapel Hill

Chapel Hill, North Carolina, 27517

Site Contact

H. James Ford, MD

hjford@med.unc.edu

919-966-2531

Duke University Medical Center, Durham, North Carolina

Status

Recruiting

Address

Duke University Medical Center

Durham, North Carolina, 27710

Site Contact

Kishan Parikh, MD

kishan.parikh@duke.edu

301-565-3004

Cincinnati Children's Hospital, Cincinnati, Ohio

Status

Recruiting

Address

Cincinnati Children's Hospital

Cincinnati, Ohio, 45229

Site Contact

Russel Hirsch, MD

russel.hirsch@cchmc.org

513-636-7072

UC Health, Cincinnati, Ohio

Status

Recruiting

Address

UC Health

Cincinnati, Ohio, 45267

Site Contact

Jean M. Elwing, MD

elwingj@ucmail.uc.edu

513-475-8523

The Oregon Clinic, Portland, Oregon

Status

Recruiting

Address

The Oregon Clinic

Portland, Oregon, 97225

Site Contact

Jeffrey C. Robinson, MD

jerobinson@orclinic.com

503-297-3778

University of Pennsylvania, Philadelphia, Pennsylvania

Status

Recruiting

Address

University of Pennsylvania

Philadelphia, Pennsylvania, 19104

Site Contact

Steven M. Kawut, MD, MS

kawut@upenn.edu

800-789-7366

Allegheny General Hospital, Pittsburgh, Pennsylvania

Status

Recruiting

Address

Allegheny General Hospital

Pittsburgh, Pennsylvania, 15212

Site Contact

Amresh Raina, MD

amresh.raina@ahn.org

412-359-3551

University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania

Status

Recruiting

Address

University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, 15213

Site Contact

Marc A. Simon, MD, MS

simonma@upmc.edu

412-802-3131

Rhode Island Hospital, Providence, Rhode Island

Status

Recruiting

Address

Rhode Island Hospital

Providence, Rhode Island, 02903

Site Contact

Corey E. Ventetuolo, MD, MS

corey_ventetuolo@brown.edu

401-444-0008

AnMed Health, Anderson, South Carolina

Status

Recruiting

Address

AnMed Health

Anderson, South Carolina, 29621

Site Contact

Abhijit Raval, MD

drravallung@gmail.com

864-225-5667

Ft. Sanders Regional Medical Center, Knoxville, Tennessee

Status

Recruiting

Address

Ft. Sanders Regional Medical Center

Knoxville, Tennessee, 37916

Site Contact

John Swisher, MD, PhD

PHAR@PHAssociation.org

865-588-8831

Vanderbilt Children's Hospital, Nashville, Tennessee

Status

Recruiting

Address

Vanderbilt Children's Hospital

Nashville, Tennessee, 37232

Site Contact

Eric D. Austin, MD, MSc

eric.austin@vumc.org

615-875-6901

Vanderbilt University Medical Center, Nashville, Tennessee

Status

Recruiting

Address

Vanderbilt University Medical Center

Nashville, Tennessee, 37232

Site Contact

Anna R. Hemnes, MD

anna.r.hemnes@vumc.org

615-322-3412

UT Southwestern Medical Center, Dallas, Texas

Status

Recruiting

Address

UT Southwestern Medical Center

Dallas, Texas, 75390

Site Contact

Sonja D. Bartolome, MD

sonja.bartolome@utsouthwestern.edu

214-645-5505

Texas Children's Hospital, Houston, Texas

Status

Recruiting

Address

Texas Children's Hospital

Houston, Texas, 77030

Site Contact

Nidhy Varghese, MD

npvarghe@texaschildrens.com

832-822-3300

Baylor Scott & White, Plano, Texas

Status

Recruiting

Address

Baylor Scott & White

Plano, Texas, 75093

Site Contact

Sahil Bakshi, MD

sahil.bakshi@bswhealth.org

469-814-3897

University of Utah Health, Salt Lake City, Utah

Status

Recruiting

Address

University of Utah Health

Salt Lake City, Utah, 84132

Site Contact

John J. Ryan, MD

john.ryan@hsc.utah.edu

801-585-7676

University of Virginia, Charlottesville, Virginia

Status

Recruiting

Address

University of Virginia

Charlottesville, Virginia, 22908

Site Contact

Sula Mazimba, MD

sm8sd@hscmail.mcc.virginia.edu

434-982-1058

Inova Fairfax Hospital, Falls Church, Virginia

Status

Recruiting

Address

Inova Fairfax Hospital

Falls Church, Virginia, 22042

Site Contact

Oksana A. Shlobin, MD

oksana.shlobin@inova.org

703-776-2986

Sentara Heart Hospital, Norfolk, Virginia

Status

Recruiting

Address

Sentara Heart Hospital

Norfolk, Virginia, 23507

Site Contact

Michael S. Eggert, MD

PHAR@PHAssociation.org

757-388-2831

VCU Medical Center, Richmond, Virginia

Status

Recruiting

Address

VCU Medical Center

Richmond, Virginia, 23298

Site Contact

Daniel Grinnan, MD

daniel.grinnan@vcuhealth.org

800-828-9000

Seattle Children's Hospital, Seattle, Washington

Status

Recruiting

Address

Seattle Children's Hospital

Seattle, Washington, 98105

Site Contact

Delphine Yung, MD

delphine.yung@seattlechildrens.org

301-565-3004

University of Washington, Seattle, Washington

Status

Recruiting

Address

University of Washington

Seattle, Washington, 98195

Site Contact

Peter Leary, MD, PhD

learyp@uw.edu

206-685-2484

Madison, Wisconsin

Status

Recruiting

Address

University of Wisconsin Hospital and Clinics

Madison, Wisconsin, 53792

Site Contact

James R. Runo, MD

jrr@medicine.wisc.edu

608-263-7203

Aurora St. Luke's Medical Center, Milwaukee, Wisconsin

Status

Recruiting

Address

Aurora St. Luke's Medical Center

Milwaukee, Wisconsin, 53215

Site Contact

Dianne L. Zwicke, MD

PHAR@PHAssociation.org

414-646-2438

Froedtert & Medical College of Wisconsin, Milwaukee, Wisconsin

Status

Recruiting

Address

Froedtert & Medical College of Wisconsin

Milwaukee, Wisconsin, 53226

Site Contact

Kenneth W. Presberg, MD

kpresber@mcw.edu

414-955-7032

For more information, please contact PHA at Research@PHAssociation.org and refer to the terms of service below.

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