DeciPHer-ILD: A Real-world Patient Registry in Group 3 Pulmonary Hypertension Associated With Interstitial Lung Disease (PH-ILD)

NCT ID: NCT06388421

Last Updated: 2026-01-30

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

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

RECRUITING

Total Enrollment

1000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2025-01-23

Study Completion Date

2030-11-30

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

This is a prospective, non-interventional, multicenter, registry of patients with pulmonary hypertension associated with interstitial lung disease (PH-ILD).

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

The purpose of this study is to observe and capture demographic characteristics, treatment patterns, and clinical outcomes of interest for patients with PH-ILD to further clinical understanding of the epidemiological landscape and outcomes of the disease and treatment.

In this registry, patients will be enrolled into 1 of 3 cohorts. Cohort 1 will include approximately 500 patients who are not receiving inhaled treprostinil at time of study enrollment. Cohort 2 will include approximately 150 patients who are newly initiated on Tyvaso/Tyvaso DPI. Cohort 3 will include approximately 350 patients who have been receiving Tyvaso/Tyvaso DPI for \>60 days.

As part of the registry, assessments will be completed for data collection in 6- or 12 month intervals, unless the data are already available via standard of care. This patient registry will follow patients for up to 5 years after enrollment.

Assessments include pulmonary function tests (PFTs) including diffusing capacity of the lungs for carbon monoxide (DLCO); high resolution computed tomography (HRCT); vital signs; 6-Minute Walk Test; blood draw for plasma N-terminal pro-BNP (NT-proBNP) concentration, genetics analysis, biomarker analysis; echocardiography; EuroQoL 5 Dimension 5 Level Questionnaire (EQ-5D-5L); King's Brief Interstitial Lung Disease Questionnaire (K-BILD); Living with Pulmonary Fibrosis Questionnaire (L-PF); Therapy Administration Questionnaire; healthcare resource utilization; current medications and rehabilitation; WHO functional class; transplant status; survival data; and RHC.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Pulmonary Hypertension Due to Lung Diseases and Hypoxia Pulmonary Hypertension Interstitial Lung Disease

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

Cohort 2

Cohort 2 will include approximately 150 patients who are newly initiated on Tyvaso/Tyvaso DPI. For patients to be eligible for Cohort 2, they must have initiated Tyvaso/Tyvaso DPI at Baseline or ≤ 60 days prior to Baseline.

Prospective study assessments

Intervention Type OTHER

Patients will complete prospective assessments at 6- and 12-month intervals for up to 5 years. There will be 1 check in at the first 3 months of enrollment. Follow up visits will include a ±45 day visit window. If an assessment is performed within 45 days of the visit window as part of the patient's standard of care, those values will be used in place of a prospective assessment.

Cohort 3

Cohort 3 will include approximately 350 patients who have been receiving Tyvaso/Tyvaso DPI for \> 60 days prior to Baseline.

Prospective study assessments

Intervention Type OTHER

Patients will complete prospective assessments at 6- and 12-month intervals for up to 5 years. There will be 1 check in at the first 3 months of enrollment. Follow up visits will include a ±45 day visit window. If an assessment is performed within 45 days of the visit window as part of the patient's standard of care, those values will be used in place of a prospective assessment.

Cohort 1

Cohort 1 will include approximately 500 patients who are not receiving inhaled treprostinil at time of study enrollment.

Prospective study assessments

Intervention Type OTHER

Patients will complete prospective assessments at 6- and 12-month intervals for up to 5 years. There will be 1 check in at the first 3 months of enrollment. Follow up visits will include a ±45 day visit window. If an assessment is performed within 45 days of the visit window as part of the patient's standard of care, those values will be used in place of a prospective assessment.

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Prospective study assessments

Patients will complete prospective assessments at 6- and 12-month intervals for up to 5 years. There will be 1 check in at the first 3 months of enrollment. Follow up visits will include a ±45 day visit window. If an assessment is performed within 45 days of the visit window as part of the patient's standard of care, those values will be used in place of a prospective assessment.

Intervention Type OTHER

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

1. Adults aged 18 years or older
2. Diagnosis of ILD by traditional or HRCT determined by the site/institution that conducted the HRCT
3. Patients with connective tissue disease must have a baseline forced vital capacity of \<70%
4. RHC confirmed PH (mean pulmonary artery pressure \>20 mmHg, pulmonary arterial wedge pressure ≤15 mmHg, pulmonary vascular resistance \>2 WU).
5. For patients to be eligible for Cohort 1, they must not be receiving inhaled treprostinil at Baseline.
6. For patients to be eligible for Cohort 2, they must have initiated Tyvaso/Tyvaso DPI at 1 of the following time points:

1. Baseline
2. ≤60 days prior to Baseline
7. For patients to be eligible for Cohort 3, they must be receiving Tyvaso/Tyvaso DPI at Baseline and for \>60 days prior to Baseline
8. Co-enrollment in other observational or interventional studies is permitted
9. Patient is willing and able to provide informed consent and complete surveys/questionnaires in English or Spanish

Exclusion Criteria

1. Confirmed diagnosis of Group 1, 2, 4, or 5 PH
2. Confirmed diagnosis of Group 3 PH related to chronic obstructive pulmonary disease or conditions that cause hypoxemia, such as untreated or inadequately treated obstructive sleep apnea and alveolar hypoventilation disorders
3. Patients receiving Yutrepia (inhaled treprostinil) at Baseline.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

United Therapeutics

INDUSTRY

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

University of Alabama at Birmingham

Birmingham, Alabama, United States

Site Status RECRUITING

Banner Health - University Medical Center Phoenix

Phoenix, Arizona, United States

Site Status RECRUITING

University of Colorado - Anschutz Medical Campus

Aurora, Colorado, United States

Site Status RECRUITING

National Jewish Health

Denver, Colorado, United States

Site Status RECRUITING

University of Florida

Gainesville, Florida, United States

Site Status RECRUITING

NCH Research Institute

Naples, Florida, United States

Site Status RECRUITING

Advent Health Medical Group Advanced Lung Disease

Orlando, Florida, United States

Site Status RECRUITING

Intercoastal Medical Group

Sarasota, Florida, United States

Site Status RECRUITING

Tampa General Hospital/University of South Florida Health

Tampa, Florida, United States

Site Status RECRUITING

Emory University

Atlanta, Georgia, United States

Site Status RECRUITING

Northwestern University

Chicago, Illinois, United States

Site Status RECRUITING

Loyola University Medical Center

Maywood, Illinois, United States

Site Status RECRUITING

Advocate Christ Medical Center

Oak Lawn, Illinois, United States

Site Status RECRUITING

Ascension St. Vincent

Indianapolis, Indiana, United States

Site Status RECRUITING

University of Kansas Medical Center

Kansas City, Kansas, United States

Site Status RECRUITING

Norton Pulmonary Specialists

Louisville, Kentucky, United States

Site Status RECRUITING

University Medical Center - New Orleans

New Orleans, Louisiana, United States

Site Status RECRUITING

University of Maryland Medical Center

Baltimore, Maryland, United States

Site Status RECRUITING

Washington University School of Medicine

St Louis, Missouri, United States

Site Status RECRUITING

Morristown Medical Center

Morristown, New Jersey, United States

Site Status RECRUITING

University of New Mexico Health Sciences Center

Albuquerque, New Mexico, United States

Site Status RECRUITING

Northwell Health

New Hyde Park, New York, United States

Site Status RECRUITING

New York University Langone Medical Center

New York, New York, United States

Site Status RECRUITING

New York Presbyterian Hospital - Weill Cornell Medicine

New York, New York, United States

Site Status RECRUITING

University of North Carolina at Chapel Hill

Chapel Hill, North Carolina, United States

Site Status RECRUITING

Duke University School of Medicine

Durham, North Carolina, United States

Site Status RECRUITING

Pulmonix, LLC

Greensboro, North Carolina, United States

Site Status RECRUITING

East Carolina University Health

Greenville, North Carolina, United States

Site Status RECRUITING

Wakemed Health and Hospital

Raleigh, North Carolina, United States

Site Status RECRUITING

University of Cincinnati Medical Center

Cincinnati, Ohio, United States

Site Status RECRUITING

The Cleveland Clinic

Cleveland, Ohio, United States

Site Status RECRUITING

Ohio State Richard M. Ross Heart Hospital

Columbus, Ohio, United States

Site Status RECRUITING

The University of Oklahoma Health Sciences Center

Oklahoma City, Oklahoma, United States

Site Status RECRUITING

Oklahoma Heart Institute

Tulsa, Oklahoma, United States

Site Status RECRUITING

Summit Health

Bend, Oregon, United States

Site Status RECRUITING

Legacy Research Institute

Portland, Oregon, United States

Site Status RECRUITING

Oregon Health & Science University

Portland, Oregon, United States

Site Status RECRUITING

St. Luke's University Health Network

Bethlehem, Pennsylvania, United States

Site Status RECRUITING

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Thomas Jefferson University - Sidney Kimmel Medical College

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Temple Lung Center

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Temple University Hospital

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

AnMed Health

Anderson, South Carolina, United States

Site Status RECRUITING

Medical University of South Carolina

Charleston, South Carolina, United States

Site Status RECRUITING

StatCare Pulmonary Consultants and Center for Biomedical Research

Knoxville, Tennessee, United States

Site Status RECRUITING

Baylor University Medical Center

Dallas, Texas, United States

Site Status RECRUITING

UT Southwest Medical Center Heart and Lung Clinic

Dallas, Texas, United States

Site Status RECRUITING

Houston Methodist

Houston, Texas, United States

Site Status RECRUITING

University of Texas Health Science Center at Houston

Houston, Texas, United States

Site Status RECRUITING

Intermountain Medical Center

Murray, Utah, United States

Site Status RECRUITING

University of Utah Health

Salt Lake City, Utah, United States

Site Status RECRUITING

Inova Medical Group

Falls Church, Virginia, United States

Site Status RECRUITING

Pulmonary Associates of Richmond, Inc.

Richmond, Virginia, United States

Site Status RECRUITING

Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

Marshall Health

Huntington, West Virginia, United States

Site Status RECRUITING

University of Wisconsin Hospital and Clinics

Madison, Wisconsin, United States

Site Status RECRUITING

Aurora St. Luke's Medical Center

Milwaukee, Wisconsin, United States

Site Status RECRUITING

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status RECRUITING

Auxilio Mutuo Hospital

Guaynabo, Puerto Rico, Puerto Rico

Site Status RECRUITING

Countries

Review the countries where the study has at least one active or historical site.

United States Puerto Rico

Central Contacts

Reach out to these primary contacts for questions about participation or study logistics.

United Therapeutics Global Medical Information

Role: CONTACT

919-485-8350

Facility Contacts

Find local site contact details for specific facilities participating in the trial.

Tejaswini Kulkarni, MD

Role: primary

205-934-3411

Karim El-Kersh, MD

Role: primary

602-229-2200

Todd Bull, MD

Role: primary

720-848-5300

Marjorie George, MD

Role: primary

303-553-2390

Ali Ataya, MD

Role: primary

352-273-8740

David Lindner, DO

Role: primary

239-624-8387

Melisa Wilson, DNP, APRN, BC

Role: primary

407-303-3638

Ryan Dunn, MD

Role: primary

941-379-1799

Ricardo Restrepo-Jaramillo, MD

Role: primary

813-821-8038

Aaron Trammell, MD, MSc

Role: primary

404-778-5736

Michael Cuttica, MD

Role: primary

312-695-4077

Daniel Dilling, MD

Role: primary

888-584-7888

Muhyaldeen Dia, MD

Role: primary

708-636-7575

Sangita Sudharshan, MD

Role: primary

317-338-6666

Leslie Spikes, MD

Role: primary

913-588-6045

John McConnell, MD

Role: primary

502-587-8000

Amita Krishnan, MD

Role: primary

504-568-4634

Steven Cassady, MD

Role: primary

410-225-8301

Robert Case, MD

Role: primary

314-454-8764

Abhishek Singh, MD, PhD

Role: primary

973-971-4179

Lana Melendres-Groves, MD

Role: primary

505-272-4751

Arunabh Talwar, MD

Role: primary

516-465-5433

Roxana Sulica, MD

Role: primary

212-263-1260

Robert Kaner, MD

Role: primary

646-962-2333

Hubert Ford, MD

Role: primary

984-974-5703

Sudarshan Rajagopal, MD, PhD

Role: primary

919-620-5300

Matthew Hunsucker, MD

Role: primary

336-522-8999

Veeranna Maddipati, MD

Role: primary

252-744-1600

Kishan Parikh, MD

Role: primary

919-350-8000

Jean Elwing, MD

Role: primary

513-475-8523

Alice Goyanes, MD

Role: primary

216-444-6503

Elie Homsy, MD

Role: primary

614-293-8000

Syed Hussain, MD

Role: primary

405-271-6253

Steven Stroud, MD

Role: primary

918-574-9003

Jeremy Feldman, MD

Role: primary

541-382-2811

Steven Sears, DO

Role: primary

503-413-5702

Jeffrey Robinson, MD

Role: primary

503-297-3778

Douglas Corwin, MD

Role: primary

484-526-3890

Jason Fritz, MD

Role: primary

215-662-8766

Gautam George, MD

Role: primary

215-955-6591

Sheila Weaver, DO

Role: primary

800-836-7536

Ahmed Sadek, MD

Role: primary

800-836-7536

Abhijit Raval, MD

Role: primary

864-512-5667

Denise Sese, MD

Role: primary

843-792-9200

Kunal Gada, MD

Role: primary

865-934-2670

Susan Mathai, MD

Role: primary

214-820-6856

Kelly Chin, MD

Role: primary

214-645-6616

Meagan Chavarria, NP

Role: primary

713-441-7779

Rodeo Abrencillo, MD

Role: primary

832-325-7100

Erin Blackstock, MD

Role: primary

801-507-4800

Emily Beck, MD

Role: primary

801-581-2000

Christopher Thomas, MD

Role: primary

703-776-2986

Shilpa Johri, MD

Role: primary

804-320-4243

Jared Dyer, DO

Role: primary

804-828-7929

Amro Al-Astal, MD

Role: primary

304-691-1000

James Runo, MD

Role: primary

608-263-7203

Eric Roberts, MD

Role: primary

414-646-2438

Kenneth Presberg, MD

Role: primary

414-955-7040

Alvaro Aranda, MD

Role: primary

787-200-4545

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

GMS-PH-401

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.

Novel Index (PIMR) in PAH
NCT05812976 COMPLETED