Real-world evidence to advance knowledge in pulmonary hypertension: Status, challenges, and opportunities. A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative's Real-world Evidence Working Group

被引：0

作者：

Morland, Kellie ^{[1
]}

Gerges, Christian ^{[2
]}

Elwing, Jean ^{[3
]}

Visovatti, Scott H. ^{[4
]}

Weatherald, Jason ^{[5
]}

Gillmeyer, Kari R. ^{[6
,7
,8
]}

Sahay, Sandeep ^{[9
]}

Mathai, Stephen C. ^{[10
]}

Boucly, Athenais ^{[11
,12
,13
]}

Williams, Paul G. ^{[14
]}

Harikrishnan, Sivadasanpillai ^{[15
]}

Minty, Evan P. ^{[16
,17
]}

Hobohm, Lukas ^{[18
,19
]}

Jose, Arun ^{[3
]}

Badagliacca, Roberto ^{[20
]}

Lau, Edmund M. T. ^{[21
,22
]}

Jing, Zhi-Cheng ^{[23
]}

Vanderpool, Rebecca R. ^{[4
]}

Fauvel, Charles ^{[24
]}

Leonidas Alves, Jose, Jr. ^{[25
]}

Strange, Geoff ^{[26
]}

Pulido, Tomas ^{[27
]}

Qian, Junyan ^{[28
]}

Li, Mengtao ^{[28
]}

Mercurio, Valentina ^{[29
]}

Zelt, Jason G. E. ^{[30
]}

Moles, Victor M. ^{[31
]}

Cirulis, Meghan M. ^{[32
,33
]}

Nikkho, Sylvia M. ^{[34
]}

Benza, Raymond L. ^{[35
]}

Elliott, C. Gregory ^{[32
,33
]}

机构：

[1] United Therapeut Corp, Global Med Affairs, Res Triangle Pk, NC 27709 USA

[2] Med Univ Vienna, Dept Internal Med 2, Div Cardiol, Vienna, Austria

[3] Univ Cincinnati, Div Pulm Crit Care & Sleep Med, Cincinnati, OH USA

[4] Ohio State Univ, Div Cardiovasc Med, Columbus, OH 43054 USA

[5] Univ Alberta, Dept Med, Div Pulm Med, Edmonton, AB, Canada

[6] Boston Univ, Chobian & Avedisian Sch Med, Pulm Ctr, Boston, MA 02215 USA

[7] VA Bedford Healthcare Syst, Ctr Healthcare Org & Implementat Res, Boston, MA USA

[8] VA Boston Healthcare Syst, Boston, MA USA

[9] Houston Methodist Hosp, Div Pulm Crit Care & Sleep Med, Houston, TX USA

[10] Johns Hopkins Univ, Sch Med, Div Pulm & Crit Care Med, Baltimore, MD USA

[11] Univ Paris Saclay, Fac Med, Le Kremlin Bicetre, France

[12] Hop Bicetre, AP HP, Ctr Reference Hypertens Plum, Serv Pneumol & Soins Intensifs Resp, Le Kremlin Bicetre, France

[13] Imperial Coll, Natl Heart & Lung Inst, London, England

[14] Milpark Hosp, Ctr Chest Dis & Crit Care, Johannesburg, South Africa

[15] Sree Chitra Tirunal Inst Med Sci & Technol, Trivandrum, Kerala, India

[16] Univ Calgary, Dept Med, Calgary, AB, Canada

[17] Univ Calgary, OBrien Inst Publ Hlth, Calgary, AB, Canada

[18] Johannes Gutenberg Univ Mainz, Univ Med Ctr, Dept Cardiol, Mainz, Germany

[19] Johannes Gutenberg Univ Mainz, Univ Med Ctr, Ctr Thrombosis & Hemostasis CTH, Mainz, Germany

[20] Sapienza Univ Rome, Dept Clin Internal Anesthesiol & Cardiovasc Sci, Policlin Umberto I, Rome, Italy

[21] Univ Sydney, Dept Resp Med, Royal Prince Alfred Hosp, Camperdown, NSW, Australia

[22] Univ Sydney, Fac Med & Hlth, Camperdown, NSW, Australia

[23] Chinese Acad Med Sci & Peking Union Med Coll, Peking Union Med Coll Hosp, State Key Lab Complex Severe & Rare Dis, Beijing, Peoples R China

[24] Univ Rouen, Ctr Hosp Univ Charles Nicolle, Ctr Competence Hypertens Pulm 27 76, Serv Cardiol,INSERM,U1096,EnVI, Rouen, France

[25] Univ Sao Paulo, Pulm Div, Heart Inst, Med Sch, Sao Paulo, Brazil

[26] Univ Notre Dame Australia, Sch Med, Perth, WA, Australia

[27] Ignacio Chavez Natl Heart Inst, Mexico City, DF, Mexico

[28] Chinese Acad Med Sci & Peking Union Med Coll, Dept Rheumatol & Clin Immunol,Natl Clin Res Ctr D, State Key Lab Complex Severe & Rare Dis,Key Lab R, Minist Sci & Technol,Minist Educ,Peking Union Med, Beijing 100730, Peoples R China

[29] Univ Naples Federico II, Dept Translat Med Sci, Naples, Italy

[30] Univ Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada

[31] Univ Michigan, Div Cardiovasc Med, Ann Arbor, MI 48106 USA

[32] Univ Utah, Div Pulm & Crit Care Med, Salt Lake City, UT 84132 USA

[33] Intermt Med Ctr, Dept Pulm & Crit Care Med, Murray, UT USA

[34] Bayer AG, Global Clin Dev, Berlin, Germany

[35] Icahn Sch Med Mt Sinai, Mt Sinai Heart, New York, NY 10029 USA

来源：

PULMONARY CIRCULATION | 2023年 / 13卷 / 04期

关键词：

administrative claims data; electronic health records; patient-generated health data; real-world data; registries; LONG-TERM SURVIVAL; INDIA PRO-KERALA; ARTERIAL-HYPERTENSION; PREDICTING SURVIVAL; CHINESE PATIENTS; UNITED-STATES; REGISTRY; MANAGEMENT; CARE; EPIDEMIOLOGY;

D O I：

10.1002/pul2.12317

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

This manuscript on real-world evidence (RWE) in pulmonary hypertension (PH) incorporates the broad experience of members of the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative Real-World Evidence Working Group. We aim to strengthen the research community's understanding of RWE in PH to facilitate clinical research advances and ultimately improve patient care. Herein, we review real-world data (RWD) sources, discuss challenges and opportunities when using RWD sources to study PH populations, and identify resources needed to support the generation of meaningful RWE for the global PH community.

引用

页数：24

共 5 条

[1] Clinical significance of pulmonary hypertension in interstitial lung disease: A consensus statement from the Pulmonary Vascular Research Institute's innovative drug development initiative-Group 3 pulmonary hypertension
Nikkho, Sylvia M.
Richter, Manuel J.
Shen, Eric
Abman, Steven H.
Antoniou, Katerina
Chung, Jonathan
Fernandes, Peter
Hassoun, Paul
Lazarus, Howard M.
Olschewski, Horst
Piccari, Lucilla
Psotka, Mitchell
Saggar, Rajan
Shlobin, Oksana A.
Stockbridge, Norman
Vitulo, Patrizio
Vizza, Carmine Dario
Wort, Stephen J.
Nathan, Steven D.
PULMONARY CIRCULATION, 2022, 12 (03)
[2] Pathogenesis, clinical features, and phenotypes of pulmonary hypertension associated with interstitial lung disease: A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative - Group 3 Pulmonary Hypertension
Piccari, Lucilla
Allwood, Brian
Antoniou, Katerina
Chung, Jonathan H.
Hassoun, Paul M.
Nikkho, Sylvia M.
Saggar, Rajan
Shlobin, Oksana A.
Vitulo, Patrizio
Nathan, Steven D.
Wort, Stephen John
PULMONARY CIRCULATION, 2023, 13 (02)
[3] Pulmonary hypertension in interstitial lung disease: Clinical trial design and endpoints: A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative-Group 3 Pulmonary Hypertension
Nathan, Steven D. D.
Fernandes, Peter
Psotka, Mitchell
Vitulo, Patrizio
Piccari, Lucilla
Antoniou, Katerina
Nikkho, Sylvia M. M.
Stockbridge, Norman
PULMONARY CIRCULATION, 2022, 12 (04)
[4] Pulmonary hypertension in the setting of interstitial lung disease: Approach to management and treatment. A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative-Group 3 Pulmonary Hypertension
Shlobin, Oksana A.
Shen, Eric
Wort, Stephen J.
Piccari, Lucilla
Scandurra, John A.
Hassoun, Paul M.
Nikkho, Sylvia M.
Nathan, Steven D.
PULMONARY CIRCULATION, 2024, 14 (01)
[5] Screening and diagnosis of pulmonary hypertension associated with chronic lung disease (PH-CLD): A consensus statement from the pulmonary vascular research institute's innovative drug development initiative-group 3 pulmonary hypertension
Vitulo, P.
Piccari, L.
Wort, S. J.
Shlobin, O. A.
Kovacs, G.
Vizza, C. D.
Hassoun, P. M.
Olschewski, H.
Girgis, R. E.
Nikkho, S. M.
Nathan, S. D.
PULMONARY CIRCULATION, 2024, 14 (04)

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Real-world evidence to advance knowledge in pulmonary hypertension: Status, challenges, and opportunities. A consensus statement from the Pulmonary Vascular Research Institute&apos;s Innovative Drug Development Initiative&apos;s Real-world Evidence Working Group

Real-world evidence to advance knowledge in pulmonary hypertension: Status, challenges, and opportunities. A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative's Real-world Evidence Working Group