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Pulmonary Hypertension Association Registry

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
0 Years and older
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

Not stated in the study description — ask the study team about visits and procedures.

Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This national study tracks care and health over time for people with certain types of pulmonary hypertension, or high blood pressure in the lungs. It includes people at participating U.S. Pulmonary Hypertension Care Centers approved by PHA. It looks at whether care follows recommended guidelines and what may lead to better or worse health.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • People of any age.
  • Give written consent to join the study.
  • Have pulmonary arterial hypertension (PAH), which is high blood pressure in the lung arteries; chronic thromboembolic pulmonary hypertension (CTEPH), caused by long-lasting blood clots in the lungs; or childhood pulmonary hypertension due to problems with lung development.
  • Join within 6 months of the first outpatient visit at a Pulmonary Hypertension Care Center.

Who can't join

  • Have Group 2 pulmonary hypertension, which is linked to problems on the left side of the heart.
  • Have Group 3 pulmonary hypertension, which is linked to lung disease or low oxygen, unless it is due to problems with lung development.
  • Have Group 5 pulmonary hypertension, which has unclear or several causes.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

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 sites (52)

AZ

  • Arizona Pulmonary Specialists, Ltd. · Phoenix, AZ 85012Jeremy Feldman, MD · Study contact · 602-274-7195Jeremy Feldman, MD · Principal investigatorMore trials in Phoenix

CA

CO

CT

FL

GA

IA

IN

KS

KY

LA

MD

MI

MN

MO

NC

NY

OH

OR

PA

RI

SC

TN

TX

UT

VA

WA

WI