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

Eligibility

Eligible Ages
All ages
Eligible Genders
All
Accepts Healthy Volunteers
No

Inclusion Criteria

  • All age groups
  • Written informed consent
  • Pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH)
  • Within 6 months of first outpatient visit at a PH Care Center

Exclusion Criteria

  • Diagnosis of WHO Group 2, 3, or 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

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

NCT ID
NCT04071327
Status
Recruiting
Sponsor
Pulmonary Hypertension Association, Inc.

Study Contact

Michael P Gray, MPH
301-565-3004
michaelg@phassociation.org

Notice

Study information shown on this site is derived from ClinicalTrials.gov (a public registry operated by the National Institutes of Health). The listing of studies provided is not certain to be all studies for which you might be eligible. Furthermore, study eligibility requirements can be difficult to understand and may change over time, so it is wise to speak with your medical care provider and individual research study teams when making decisions related to participation.