Summary

at UC Davis UCSF
study started
estimated completion
Roblee P. Allen, MD(ucdavis)Teresa De Marco, MD(ucsf)Jeffrey Fineman, MD(ucsf)

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 Hypertension Pulmonary arterial hypertension (PAH) Chronic thromboembolic pulmonary hypertension (CTEPH)

Eligibility

You can join if…

  • All age groups
  • Written informed consent
  • Pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH)
  • Within 6 months of first outpatient visit at a PH Care Center

You CAN'T join if...

  • Diagnosis of WHO Group 2, 3, or 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

Lead Scientists

  • Roblee P. Allen, MD (ucdavis)
    Professor, Pulmonary, Critical Care, and Sleep Medicine. Authored (or co-authored) 39 research publications
  • Teresa De Marco, MD (ucsf)
    CLINICAL INTERESTS: Advanced heart failure, cardiomyopathies, heart transplantation, mechanical circulatory support, and pulmonary hypertension RESEARCH INTERESTS: Translational research in the diagnosis, prognosis, medical and surgical treatment for the above disease states
  • Jeffrey Fineman, MD (ucsf)
    Professor, Pediatrics. Authored (or co-authored) 182 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Pulmonary Hypertension Association, Inc.
Links
http://www.phassociation.org/PHAR
ID
NCT04071327
Study Type
Observational [Patient Registry]
Last Updated