Pulmonary Hypertension Association Registry (PHAR)
R
Roberto Bernardo
Primary Investigator
Overview
What is this study about?
The PHA Registry (PHAR) is a national study about people who have pulmonary arterial
hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). PHAR collectswith 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 treatedding to recommended guidelines, and to see if there are certain factors that can lead to
better or worse outcomes.
Description
What happens during this study?
PHAR will include information about people with PAH and CTEPH in the U.S. who are seen atg PHA-accredited PH Care Centers. PHAR contains data about patient care andutcomes. Specifically, data in the PHAR includes information on diagnosis; clinical status;us; diagnosis test results; body size; treatment information; interest ing in clinical trials; family health and social history; and information aboutking, alcohol, or drug use. Participants are followed over time, and provide updates suchhanges in therapy, how often participants need to go to the hospital, and survival. Suchy help healthcare providers provide better care.
Eligibility
You may be eligible for this study if you meet the following criteria:
-
Conditions:
Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension
-
Age: Between 1 N/A - 100 N/A
-
Gender: All
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 lungdisease
- Diagnosis of WSPH Group 5 pulmonary hypertension
Updated on
05 May 2024.
Study ID: PHAR
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