A Study of Real-world Cohort of Pulmonary Arterial Hypertension (PAH) Participants

NCT ID: NCT04955990

Last Updated: 2025-02-03

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

TERMINATED

Clinical Phase

PHASE4

Total Enrollment

232 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-10-14

Study Completion Date

2022-12-20

Brief Summary

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This study is designed to describe pulmonary arterial hypertension (PAH) participants in terms of their clinical characteristics, therapies used, disease progression, and outcomes (example, death, hospitalization, risk category for predicted mortality risk, and patient-reported outcomes \[PROs\]) in real-world clinical practice. This study will collect high-quality real-world data that may be used as a stand-alone dataset or in combination with other studies to address relevant research questions (example, serve as an external control dataset to another study) to support development and access to PAH therapies, as well as to contribute to the knowledge base of PAH through publications.

Detailed Description

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Conditions

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Pulmonary Arterial Hypertension

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

OTHER

Blinding Strategy

NONE

Study Groups

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Participants with PAH

Participants with pulmonary arterial hypertension (PAH) who newly initiate any PAH therapy(ies) at the index date (date when a participant starts the first new PAH therapy after baseline assessments) in a routine clinical setting, either as first-line therapy, as replacement therapies, as concomitant with other PAH therapies, or have already been receiving macitentan 10 milligrams (mg) for at least 3 months prior to the index date. The primary data source for this study will be the medical records of each participant.

Group Type EXPERIMENTAL

PAH Therapies

Intervention Type OTHER

No Drug will be administered as part of this study. Real world data will be collected in participants who newly initiate PAH therapies in routine clinical setting or have already been receiving macitentan 10 mg for at least 3 months prior to the index date.

Interventions

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PAH Therapies

No Drug will be administered as part of this study. Real world data will be collected in participants who newly initiate PAH therapies in routine clinical setting or have already been receiving macitentan 10 mg for at least 3 months prior to the index date.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Symptomatic pulmonary arterial hypertension (PAH) in any PAH subtype
* PAH diagnosis confirmed by hemodynamic evaluation at rest at any time prior to or at the index date fulfilling all of the criteria below: a) Mean pulmonary artery pressure greater than (\>) 20 millimeters of mercury (mm Hg), and b) Pulmonary artery wedge pressure or left ventricular end diastolic pressure less than or equal to (\<=) 15 mm Hg, and c) Pulmonary vascular resistance greater than or equal to (\>=) 3 Wood Units (that is, \>= 240 dynes seconds per centimeters penta \[dyn∙sec/cm\^5\])
* Participant satisfies either a or b: a) Newly initiating 1 or more PAH therapy(ies) (as monotherapy or add-on therapy) at index date. These newly initiated PAH therapies should not have been used within 3 months of the index date; b) Taking macitentan 10 milligrams (mg) therapy (as monotherapy or in combination) with no changes in PAH therapy for within 3 months prior to the index date
* All mandated assessments must be performed and recorded at the baseline visit before the initiation of the new PAH therapy at the index date or enrollment in the study.
* For the pulmonary arterial hypertension-symptoms and impact (PAH-SYMPACT) substudy only: Participants initiating any endothelin receptor antagonist (ERA) or phosphodiesterase-5 inhibitor therapies at index date or at therapy change must provide consent to enroll in the optional PAH-SYMPACT substudy. Refusal to give consent for the optional PAH-SYMPACT substudy will not exclude a participant from participation in the main study

Exclusion Criteria

* Participants enrolled in any interventional clinical trial with an investigational therapy in the 3-month period prior to index date
* Currently enrolled in an observational study sponsored or managed by a Janssen company
* Presence of moderate or severe obstructive lung disease (forced expiratory volume in 1 second \[FEV1\] / forced vital capacity \[FVC\] \<70%; and FEV1 \<60% of predicted after bronchodilator administration) in participants with a known or suspected history of significant lung disease, as documented by a spirometry test performed within 1 year prior to screening
* Presence of moderate or severe restrictive lung disease (for example, total lung capacity or FVC \<60 percent \[%\] of normal predicted value) in participants with a known or suspected history of significant lung disease, as documented by a spirometry test performed within 1 year prior to screening
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Actelion

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Actelion Clinical Trial

Role: STUDY_DIRECTOR

Actelion

Locations

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Bay Area Cardiology Associates, P.A. - Brandon Office

Brandon, Florida, United States

Site Status

University of South Florida

Tampa, Florida, United States

Site Status

Northwestern University

Chicago, Illinois, United States

Site Status

University Of Iowa - Hospitals & Clinics

Iowa City, Iowa, United States

Site Status

University of Kansas Medical Center

Kansas City, Kansas, United States

Site Status

Kentuckiana Pulmonary Associates

Louisville, Kentucky, United States

Site Status

University of Maryland

Baltimore, Maryland, United States

Site Status

Tufts Medical Center

Boston, Massachusetts, United States

Site Status

University of Michigan

Ann Arbor, Michigan, United States

Site Status

Mayo Clinic - Rochester

Rochester, Minnesota, United States

Site Status

University of Missouri

Columbia, Missouri, United States

Site Status

University of New Mexico

Albuquerque, New Mexico, United States

Site Status

University of Cinncinnati Physicans- UC Health Physicnas Office

Cincinnati, Ohio, United States

Site Status

University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, United States

Site Status

Houston Methodist Hospital

Houston, Texas, United States

Site Status

Instituto Cardiovascular de Rosario

Rosario, , Argentina

Site Status

Universidade Federal De Minas Gerais - Hospital das Clínicas

Belo Horizonte, , Brazil

Site Status

Universidade Estadual Paulista 'Julio De Mesquita Filho'

Botucatu, , Brazil

Site Status

Irmandade Santa Casa de Misericordia de Porto Alegre

Porto Alegre, , Brazil

Site Status

Hospital Das Clinicas Da Faculdade De Medicina Da USP

São Paulo, , Brazil

Site Status

University of Alberta Hospital

Edmonton, Alberta, Canada

Site Status

London Health Sciences Centre Victoria Hospital

London, Ontario, Canada

Site Status

Beijing Anzhen Hospital

Beijing, , China

Site Status

Beijing Fuwai Hospital

Beijing, , China

Site Status

Peking Union Medical College Hospital

Beijing, , China

Site Status

West China Hospital Sichuan University

Chengdu, , China

Site Status

Shanghai Pulmonary Hospital

Shanghai, , China

Site Status

Universitatsklinikum Bonn

Bonn, , Germany

Site Status

Ospedale S.Giuseppe, Gruppo MultiMedica

Milan, , Italy

Site Status

IRCCS Policlinico San Matteo, Università degli studi di Pavi

Pavia, , Italy

Site Status

Universita degli Studi di Roma 'La Sapienza' - Umberto I Policlinico di Roma

Rome, , Italy

Site Status

National Hospital Organization Okayama Medical Center

Okayama, , Japan

Site Status

National Heart Institute

Kuala Lumpur, , Malaysia

Site Status

Vrije Universiteit Amsterdam (VU)

Amsterdam, , Netherlands

Site Status

Sint Antonius Ziekenhuis

Nieuwegein, , Netherlands

Site Status

Erasmus MC

Rotterdam, , Netherlands

Site Status

Krakowski Szpital Specjalistyczny im Jana Pawla II

Krakow, , Poland

Site Status

Wojewodzki Szpital Specjalistyczny im Stefana Kardynala Wyszynskiego SPZOZ

Lublin, , Poland

Site Status

CardioPulmonary Research, PSC

Guaynabo, , Puerto Rico

Site Status

National Heart Centre (NHC) Singapore

Singapore, , Singapore

Site Status

Pusan National University Hospital

Busan, , South Korea

Site Status

Gachon University Gil Medical Center

Incheon, , South Korea

Site Status

Severance Hospital Yonsei University Health System

Seoul, , South Korea

Site Status

Asan Medical Center

Seoul, , South Korea

Site Status

The Catholic University of Korea Seoul St Mary s Hospital

Seoul, , South Korea

Site Status

Hosp. Univ. 12 de Octubre

Madrid, , Spain

Site Status

Hosp. Univ. Pta. de Hierro Majadahonda

Majadahonda, , Spain

Site Status

Hosp. Univ. Marques de Valdecilla

Santander, , Spain

Site Status

Sahlgrenska Universitetsjukhuset

Gothenburg, , Sweden

Site Status

Royal Free Hospital

London, , United Kingdom

Site Status

Hammersmith Hospital

London, , United Kingdom

Site Status

Freeman Hospital

Newcastle upon Tyne, , United Kingdom

Site Status

Papworth Hospital, Cambridge University

Papworth Everard, , United Kingdom

Site Status

Sheffield Teaching Hospitals NHS Foundation Trust Royal Hallamshire Hospital

Sheffield, , United Kingdom

Site Status

Countries

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United States Argentina Brazil Canada China Germany Italy Japan Malaysia Netherlands Poland Puerto Rico Singapore South Korea Spain Sweden United Kingdom

Other Identifiers

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67896062PAH4005

Identifier Type: OTHER

Identifier Source: secondary_id

CR109007

Identifier Type: -

Identifier Source: org_study_id

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