Recent Research and the PHA Registry – How PHAR have we come?

PHAR data has already yielded numerous academic contributions (as listed below).

• American College of Chest Physicians (ACCP) 2016
  • A Cross-Sectional Assessment of Adherence to Expert Consensus Diagnosis and Treatment Guidelines by Comprehensive Care Centers Accredited by the Pulmonary Hypertension Association
• American Thoracic Society (ATS) 2016
  • Characterization of Centers Accredited by the Pulmonary Hypertension Association (PHA) in the Pulmonary Hypertension Care Centers (PHCC) Initiative During Programmatic Year One
  • Evaluation of Quality of Care and Quality of Life of Pulmonary Hypertension (PH) Patients Seen in PH Care Centers: Pulmonary Hypertension Association Registry (PHAR) Study Design
• American Thoracic Society (ATS) 2017
  • Characterization of Hispanics with Pulmonary Hypertension in the US: The Pulmonary Hypertension Association Registry
  • Determinants of Health Related Quality of Life in PAH: Data from the Pulmonary Hypertension Association Registry
• American Thoracic Society (ATS) 2018
  • Frequency of Palliative Care Referrals in Newly Diagnosed Pulmonary Arterial Hypertension (PAH): The Pulmonary Hypertension Association Registry
• PHA’s 2018 International PH Conference and Scientific Sessions
  • Frequency of Palliative Care Referrals in Newly Diagnosed Pulmonary Arterial Hypertension (PAH): The Pulmonary Hypertension Association Registry
  • Intersecting Identities and Patient Outcomes in Pulmonary Arterial Hypertension: Early Results in Derivation of a Model Using the Pulmonary Hypertension Association Registry (PHAR)
• American Thoracic Society (ATS) 2019
  • Increasing Age Is Associated with Worsening Physical Function Despite More Favorable Cardiopulmonary Hemodynamics: A Pulmonary Hypertension Association Registry (PHAR) Report
  • Intersecting identities and patient outcomes in Pulmonary Arterial Hypertension: Early Results in Derivation of a Model Using the Pulmonary Hypertension Association Registry (PHAR)
  • Nurse staffing and the quality of life and outcomes of patients with pulmonary arterial hypertension:  The Pulmonary Hypertension Association Registry
  • Obesity and quality of life in pulmonary arterial hypertension (PAH): The Pulmonary Hypertension Association Registry (PHAR)
• International Society for Heart and Lung Transplantation (ISHLT) 2019
  • Demographic, Hemodynamic, and HRQL Differences between Methamphetamine-Associated and Idiopathic PAH: The Pulmonary Hypertension Association Registry

• American Thoracic Society (ATS) 2020
  • Derivation of the Pulmonary Hypertension Association Registry Evaluation
  • Health disparities and treatment patterns in portopulmonary hypertension and idiopathic pulmonary arterial hypertension: analysis of The Pulmonary Hypertension Association Registry
  • Hospitalization In Connective Tissue Disease Associated Pulmonary Arterial Hypertension: The Pulmonary Hypertension Association Registry
  • Pulmonary Artery Compliance In Pulmonary Arterial Hypertension And Chronic Thromboembolic Pulmonary Hypertension: The Pulmonary Hypertension Association Registry
  • Quality Of Life Of Patients With Chronic Thromboembolic Pulmonary Hypertension (CTEPH) And Idiopathic Pulmonary Arterial Hypertension (IPAH): The Pulmonary Hypertension Association Registry (PHAR)
  • Risk Prediction Models Are Associated With Patient Centered Outcomes In PAH: The Pulmonary Hypertension Association Registry

Other literature (such as articles, abstracts and presentations) related to the PHCC initiative includes (but is not limited to):

 2014

• Do Patients With Pulmonary Arterial Hypertension Benefit From Referral to a Specialized Center?
• Implementation of the PHA Pulmonary Hypertension Care Center Accreditation Program
• Pulmonary Hypertension Care Centers

2015

• Self-reported physician practices in pulmonary arterial hypertension: Diagnosis, assessment, and referral

2016

• Managing the Patient with Pulmonary Hypertension: Specialty Care Centers, Coordinated Care, and Patient Support

2017

• Pulmonary Hypertension Care Center Network: Improving Care and Outcomes in Pulmonary Hypertension

2018

• PH Professional Network: Roadmap to Accreditation: Practical Aspects
• PH Roundtable: Center-based Care  
• The Pulmonary Hypertension Association Registry: Rationale, Design, and Role in Quality Improvement
• Update on the PHA Pulmonary Hypertension Care Center Network: Early Experience With the National Accreditation Program