Recent Research and the PHA Registry

Clinical Differences and Outcomes between Methamphetamine-associated and Idiopathic Pulmonary Arterial Hypertension in the Pulmonary Hypertension Association Registry.
Kolaitis NA, Zamanian RT, de Jesus Perez VA, Badesch DB, Benza RL, Burger CD, Chakinala MM, Elwing JM, Feldman J, Lammi MR, Mathai SC, McConnell JW, Presberg KW, Robinson JC, Sager J, Shlobin OA, Simon MA, Kawut SM, Glidden DV, Singer JP, De Marco T; Pulmonary Hypertension Association Registry Investigators. Ann Am Thorac Soc. 2021 Apr;18(4):613-622. doi: 10.1513/AnnalsATS.202007-774OC.PMID: 33064950

Health disparities and treatment approaches in portopulmonary hypertension and idiopathic pulmonary arterial hypertension: an analysis of the Pulmonary Hypertension Association Registry.
DuBrock HM, Burger CD, Bartolome SD, Feldman JP, Ivy DD, Rosenzweig EB, Sager JS, Presberg KW, Mathai SC, Lammi MR, Klinger JR, Eggert M, De Marco T, Elwing JM, Badesch D, Bull TM, Cadaret LM, Ramani G, Thenappan T, Ford HJ, Al-Naamani N, Simon MA, Mazimba S, Runo JR, Chakinala M, Horn EM, Ryan JJ, Frantz RP, Krowka MJ. Pulm Circ. 2021 May 17;11(3):20458940211020913. doi: 10.1177/20458940211020913. eCollection 2021 Jul-Sep. PMID: 34158918

Age-related differences in hemodynamics and functional status in pulmonary arterial hypertension: Baseline results from the Pulmonary Hypertension Association Registry.
DesJardin JT, Kolaitis NA, Kime N, Kronmal RA, Benza RL, Elwing JM, Lammi MR, McConnell JW, Presberg KW, Sager JS, Shlobin OA, De Marco T; PHAR Investigators. J Heart Lung Transplant. 2020 Sep;39(9):945-953. doi: 10.1016/j.healun.2020.05.005. Epub 2020 May 16.PMID: 32507341

Prediction of Health-related Quality of Life and Hospitalization in Pulmonary Arterial Hypertension: The Pulmonary Hypertension Association Registry.
Min J, Badesch D, Chakinala M, Elwing J, Frantz R, Horn E, Klinger J, Lammi M, Mazimba S, Sager J, Shlobin O, Simon M, Thenappan T, Grinnan D, Ventetuolo C, Al-Naamani N; PHAR Investigators. Am J Respir Crit Care Med. 2021 Mar 15;203(6):761-764. doi: 10.1164/rccm.202010-3967LE.PMID: 33211974

Obesity in Pulmonary Arterial Hypertension (PAH): The Pulmonary Hypertension Association Registry (PHAR).
Min J, Feng R, Badesch D, Berman-Rosenzweig E, Burger C, Chakinala M, De Marco T, Feldman J, Hemnes A, Horn EM, Lammi MR, Mathai S, McConnell JW, Presberg K, Robinson J, Sager J, Shlobin OA, Simon M, Thenappan T, Ventetuolo C, Al-Naamani N; PHAR Investigators. Ann Am Thorac Soc. 2020 Oct 21;18(2):229-37. doi: 10.1513/AnnalsATS.202006-612OC. Online ahead of print.PMID: 33085915

Residence at moderately high altitude and its relationship with WHO Group 1 pulmonary arterial hypertension symptom severity and clinical characteristics: the Pulmonary Hypertension Association Registry.
Fakhri S, Hannon K, Moulden K, Peterson R, Hountras P, Bull T, Maloney J, De Marco T, Ivy D, Thenappan T, Sager JS, Ryan JJ, Mazimba S, Hirsch R, Chakinala M, Shlobin O, Lammi M, Zwicke D, Robinson J, Benza RL, Klinger J, Grinnan D, Mathai S, Badesch D. Pulm Circ. 2020 Nov 10;10(4):2045894020964342. doi: 10.1177/2045894020964342. eCollection 2020 Oct-Dec.PMID: 33240488

EmPHasis-10 as a measure of health-related quality of life in pulmonary arterial hypertension: data from PHAR.
Borgese M, Badesch D, Bull T, Chakinala M, DeMarco T, Feldman J, Ford HJ, Grinnan D, Klinger JR, Bolivar L, Shlobin OA, Frantz RP, Sager JS, Mathai SC, Kawut S, Leary PJ, Gray MP, Popat RA, Zamanian RT; PHAR Study Group. Eur Respir J. 2021 Feb 25;57(2):2000414. doi: 10.1183/13993003.00414-2020. Print 2021 Feb.PMID: 33243844

PHAR data has 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