Pulmonary Hypertension Association Registry

Status: Recruiting
Location: See all (52) locations...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• 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

Locations
United States
Arizona
Arizona Pulmonary Specialists, Ltd.
RECRUITING
Phoenix
California
UC Davis Health
RECRUITING
Sacramento
UCSF Benioff Children's Hospital
RECRUITING
San Francisco
UCSF Medical Center
RECRUITING
San Francisco
Cottage Health System - Santa Barbara Pulmonary Associates
RECRUITING
Santa Barbara
Stanford University
RECRUITING
Stanford
Colorado
Children's Hospital Colorado
RECRUITING
Aurora
UC Health - Anschutz Medical Campus
RECRUITING
Aurora
Connecticut
University of Connecticut Health
RECRUITING
Farmington
Florida
Mayo Clinic Florida
RECRUITING
Jacksonville
Georgia
Northside Hospital
RECRUITING
Atlanta
Iowa
University of Iowa Hospitals & Clinic
RECRUITING
Iowa City
Indiana
Indiana University Health
NOT_YET_RECRUITING
Indianapolis
Kansas
KU Medical Center
RECRUITING
Kansas City
Kentucky
Kentuckiana Pulmonary Associates
RECRUITING
Louisville
Louisiana
Ochsner Medical Center
RECRUITING
Jefferson
LSU Healthcare Network Clinic
RECRUITING
New Orleans
Maryland
Johns Hopkins University
RECRUITING
Baltimore
University of MD Medical Group, PA
RECRUITING
Baltimore
Michigan
Henry Ford Hospital
RECRUITING
Detroit
Minnesota
University of Minnesota Health
RECRUITING
Minneapolis
Mayo Clinic
RECRUITING
Rochester
Missouri
Washington University in St. Louis
RECRUITING
St Louis
North Carolina
UNC Chapel Hill
RECRUITING
Chapel Hill
Duke University Medical Center
RECRUITING
Durham
New York
Columbia University Medical Center/NewYork-Presbyterian Hospital
RECRUITING
New York
Weill Cornell Medical Center
RECRUITING
New York
University of Rochester Medical Center
RECRUITING
Rochester
Ohio
Cincinnati Children's Hospital
RECRUITING
Cincinnati
UC Health
RECRUITING
Cincinnati
Oregon
The Oregon Clinic
RECRUITING
Portland
Pennsylvania
University of Pennsylvania
RECRUITING
Philadelphia
Allegheny General Hospital
RECRUITING
Pittsburgh
University of Pittsburgh Medical Center
RECRUITING
Pittsburgh
Rhode Island
Rhode Island Hospital
RECRUITING
Providence
South Carolina
AnMed Health
RECRUITING
Anderson
Tennessee
Ft. Sanders Regional Medical Center
RECRUITING
Knoxville
Vanderbilt Children's Hospital
RECRUITING
Nashville
Vanderbilt University Medical Center
RECRUITING
Nashville
Texas
UT Southwestern Medical Center
RECRUITING
Dallas
Texas Children's Hospital
RECRUITING
Houston
Baylor Scott & White
RECRUITING
Plano
Utah
University of Utah Health
RECRUITING
Salt Lake City
Virginia
University of Virginia
RECRUITING
Charlottesville
Inova Fairfax Hospital
RECRUITING
Falls Church
Sentara Heart Hospital
RECRUITING
Norfolk
VCU Medical Center
RECRUITING
Richmond
Washington
Seattle Children's Hospital
RECRUITING
Seattle
University of Washington
RECRUITING
Seattle
Wisconsin
University of Wisconsin Hospital and Clinics
RECRUITING
Madison
Aurora St. Luke's Medical Center
RECRUITING
Milwaukee
Froedtert & Medical College of Wisconsin
RECRUITING
Milwaukee
Contact Information
Primary
Elizabeth Joseloff, PhD
PHAR@PHAssociation.org
301-565-3004
Backup
Charles D Burger, MD
burger.charles@mayo.edu
904-953-2000
Time Frame
Start Date: 2015-10
Estimated Completion Date: 2025-12
Participants
Target number of participants: 3000
Treatments
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.
Related Therapeutic Areas
Sponsors
Leads: Pulmonary Hypertension Association, Inc.

This content was sourced from clinicaltrials.gov