Pulmonary Hypertension Association Registry

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.

Conditions

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

Eligibility

Eligible Ages
Over 0 Years
Eligible Genders
All
Accepts Healthy Volunteers
No

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

Phase
Study Type
Observational [Patient Registry]
Observational Model
Cohort
Time Perspective
Prospective

Arm Groups

ArmDescriptionAssigned Intervention
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.

Recruiting Locations

University of MD Medical Group, PA
Baltimore, Maryland 21201
Contact:
Gautam V. Ramani, MD
410-328-7260
gramani@som.umaryland.edu

More Details

Status
Recruiting
Sponsor
Pulmonary Hypertension Association, Inc.

Study Contact

Elizabeth Joseloff, PhD
301-565-3004
PHAR@PHAssociation.org