Summary

Location
at UC Davis UCSF
Dates
study started
completion around
Principal Investigator
by Roblee P. Allen, MD (ucdavis)Teresa De Marco, MD (ucsf)Jeffrey Fineman, MD (ucsf)
Headshot of Teresa De Marco
Teresa De Marco
Headshot of Jeffrey Fineman
Jeffrey Fineman

Description

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.

Keywords

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

Eligibility

You can join if…

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

Locations

  • UC Davis Health accepting new patients
    Sacramento California 95816 United States
  • 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 University of California Health

  • Roblee P. Allen, MD (ucdavis)
    Professor Emeritus, Pulmonary, Critical Care, and Sleep Medicine, School of Medicine. Authored (or co-authored) 42 research publications
  • Teresa De Marco, MD (ucsf)
    Professor, Medicine, School of Medicine. Authored (or co-authored) 71 research publications
  • Jeffrey Fineman, MD (ucsf)
    Professor, Pediatrics, School of Medicine. Authored (or co-authored) 227 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Pulmonary Hypertension Association, Inc.
Links
Related Info
ID
NCT04071327
Study Type
Observational [Patient Registry]
Participants
Expecting 3000 study participants
Last Updated