Pulmonary Hypertension Association Registry

Conditions

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

Eligibility Criteria

Sex

ALL

Age

0 Years - N/A

Healthy Volunteers

Not accepted

Study Details

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.

Key Dates

Start date

Oct 31, 2015

Status verified

Nov 2025

Primary completion

Dec 31, 2025

Completion

Dec 31, 2025

Study Design

Enrollment

3,000 participants (estimated)

Arms

• Arm: Pulmonary arterial hypertension (PAH)
  Patients with newly diagnosed or established PAH, within 6 months of first outpatient visit to a PH Care Center
• Arm: Chronic thromboembolic pulmonary hypertension (CTEPH)
  Patients with newly diagnosed or established CTEPH, within 6 months of first outpatient visit to a PH Care Center
• Arm: 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.

Primary Outcome Measure

Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics [ Time Frame: 10 years ]

Central Contacts

• Elizabeth Joseloff, PhD
  301-565-3004
  [email protected]
• Charles D Burger, MD
  904-953-2000
  [email protected]

Locations (52)

Find similar trials in Phoenix, AZ

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