for people ages 0 years and up (full criteria)
at San Francisco, California and other locations
study started
completion around
Principal Investigator
by Teresa De Marco, MDJeffrey Fineman, MD
Headshot of Teresa De Marco
Teresa De Marco
Headshot of Jeffrey Fineman
Jeffrey Fineman



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.


Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension, Hypertension, Pulmonary arterial hypertension (PAH), Chronic thromboembolic pulmonary hypertension (CTEPH)


You can join if…

Open to people ages 0 years and up

You CAN'T join if...

  • 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


  • UCSF Medical Center accepting new patients
    San Francisco California 94143 United States
  • UCSF Benioff Children's Hospital accepting new patients
    San Francisco California 94158 United States
  • Stanford University accepting new patients
    Stanford California 94305 United States

Lead Scientists at UCSF

  • Teresa De Marco, MD
    Professor, Medicine, School of Medicine. Authored (or co-authored) 71 research publications
  • Jeffrey Fineman, MD
    Professor, Pediatrics, School of Medicine. Authored (or co-authored) 229 research publications


accepting new patients
Start Date
Completion Date
Pulmonary Hypertension Association, Inc.
Related Info
Study Type
Observational [Patient Registry]
Expecting 3000 study participants
Last Updated