Pulmonary Hypertension Association Registry (PHAR)

  • STATUS
    Recruiting
  • End date
    Oct 24, 2025
  • participants needed
    3000
  • sponsor
    Pulmonary Hypertension Association, Inc.
Updated on 3 March 2022
hypertension
pulmonary disease
pulmonary arterial hypertension
chronic thromboembolic pulmonary hypertension

Summary

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.

Details
Condition Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension
Clinical Study IdentifierNCT04071327
SponsorPulmonary Hypertension Association, Inc.
Last Modified on3 March 2022

Eligibility

Yes No Not Sure

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
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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