RECRUITING

Pulmonary Hypertension Association Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Pulmonary Hypertension Association Registry

Quick Facts

Study Start:2015-10
Study Completion:2025-10
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04071327

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.

Ages Eligible for Study:0 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * All age groups
  2. * Written informed consent
  3. * Pulmonary arterial hypertension (PAH), chronic thromboembolic pulmonary hypertension (CTEPH), or pediatric PH due to developmental lung disease
  4. * Within 6 months of first outpatient visit at a PH Care Center
  1. * Diagnosis of WSPH Group 2 pulmonary hypertension
  2. * Diagnosis of WSPH Group 3 pulmonary hypertension, except PH due to developmental lung disease
  3. * Diagnosis of WSPH Group 5 pulmonary hypertension

Contacts and Locations

Study Contact

Elizabeth Joseloff, PhD
CONTACT
301-565-3004
PHAR@PHAssociation.org
Charles D Burger, MD
CONTACT
904-953-2000
burger.charles@mayo.edu

Study Locations (Sites)

Arizona Pulmonary Specialists, Ltd.
Phoenix, Arizona, 85012
United States
UC Davis Health
Sacramento, California, 95816
United States
UCSF Medical Center
San Francisco, California, 94143
United States
UCSF Benioff Children's Hospital
San Francisco, California, 94158
United States
Cottage Health System - Santa Barbara Pulmonary Associates
Santa Barbara, California, 93105
United States
Stanford University
Stanford, California, 94305
United States
Children's Hospital Colorado
Aurora, Colorado, 80045
United States
UC Health - Anschutz Medical Campus
Aurora, Colorado, 80045
United States
University of Connecticut Health
Farmington, Connecticut, 06030
United States
Mayo Clinic Florida
Jacksonville, Florida, 32224
United States
Northside Hospital
Atlanta, Georgia, 30342
United States
Indiana University Health
Indianapolis, Indiana, 46202
United States
University of Iowa Hospitals & Clinic
Iowa City, Iowa, 52242
United States
KU Medical Center
Kansas City, Kansas, 66160
United States
Kentuckiana Pulmonary Associates
Louisville, Kentucky, 40202
United States
Ochsner Medical Center
Jefferson, Louisiana, 70121
United States
LSU Healthcare Network Clinic
New Orleans, Louisiana, 70115
United States
University of MD Medical Group, PA
Baltimore, Maryland, 21201
United States
Johns Hopkins University
Baltimore, Maryland, 21287
United States
Henry Ford Hospital
Detroit, Michigan, 48202
United States
University of Minnesota Health
Minneapolis, Minnesota, 55455
United States
Mayo Clinic
Rochester, Minnesota, 55905
United States
Washington University in St. Louis
Saint Louis, Missouri, 63110
United States
Weill Cornell Medical Center
New York, New York, 10021
United States
Columbia University Medical Center/NewYork-Presbyterian Hospital
New York, New York, 10032
United States
University of Rochester Medical Center
Rochester, New York, 14642-0001
United States
UNC Chapel Hill
Chapel Hill, North Carolina, 27517
United States
Duke University Medical Center
Durham, North Carolina, 27710
United States
Cincinnati Children's Hospital
Cincinnati, Ohio, 45229
United States
UC Health
Cincinnati, Ohio, 45267
United States
The Oregon Clinic
Portland, Oregon, 97225
United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19104
United States
Allegheny General Hospital
Pittsburgh, Pennsylvania, 15212
United States
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, 15213
United States
Rhode Island Hospital
Providence, Rhode Island, 02903
United States
AnMed Health
Anderson, South Carolina, 29621
United States
Ft. Sanders Regional Medical Center
Knoxville, Tennessee, 37916
United States
Vanderbilt Children's Hospital
Nashville, Tennessee, 37232
United States
Vanderbilt University Medical Center
Nashville, Tennessee, 37232
United States
UT Southwestern Medical Center
Dallas, Texas, 75390
United States
Texas Children's Hospital
Houston, Texas, 77030
United States
Baylor Scott & White
Plano, Texas, 75093
United States
University of Utah Health
Salt Lake City, Utah, 84132
United States
University of Virginia
Charlottesville, Virginia, 22908
United States
Inova Fairfax Hospital
Falls Church, Virginia, 22042
United States
Sentara Heart Hospital
Norfolk, Virginia, 23507
United States
VCU Medical Center
Richmond, Virginia, 23298
United States
Seattle Children's Hospital
Seattle, Washington, 98105
United States
University of Washington
Seattle, Washington, 98195
United States
University of Wisconsin Hospital and Clinics
Madison, Wisconsin, 53792
United States
Aurora St. Luke's Medical Center
Milwaukee, Wisconsin, 53215
United States
Froedtert & Medical College of Wisconsin
Milwaukee, Wisconsin, 53226
United States

Collaborators and Investigators

Sponsor: Pulmonary Hypertension Association, Inc.

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 Registration Dates

Study Start Date2015-10
Study Completion Date2025-10

Study Record Updates

Study Start Date2015-10
Study Completion Date2025-10

Terms related to this study

Additional Relevant MeSH Terms

  • Pulmonary Arterial Hypertension
  • Chronic Thromboembolic Pulmonary Hypertension
  • Pulmonary Hypertension