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

Sponsored by United Therapeutics

About this study

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

The purpose of this study is to capture and analyze patient characteristics, treatment patterns, and clinical outcomes of patients with PH-ILD, with the goal of enhancing our current understanding of the disease state and its treatment outcomes. The study also aims to describe the disease trajectory of ILD patients at risk of pulmonary hypertension (PH). In this registry, patients will be enrolled into 1 of 4 cohorts. Cohort 1 will include approximately 200 patients who are not receiving inhaled treprostinil at time of study enrollment. Cohort 2 will include approximately 300 patients who are newly initiated on Tyvaso/Tyvaso DPI. Cohort 3 will include approximately 300 patients who have been receiving Tyvaso/Tyvaso DPI for \>90 days. Cohort 4 will include approximately 100 ILD patients wi…

Where this study is enrolling (69)

  • University of Alabama at Birmingham

    Birmingham, Alabama

    Call 205-934-3411

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  • Banner Health - University Medical Center Phoenix

    Phoenix, Arizona

    Call 602-229-2200

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  • UC Davis Health Medical Center

    Sacramento, California

    Call 916-734-8230

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  • Cedars-Sinai Medical Center

    Los Angeles, California

    Call 310-423-8784

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  • University of Colorado - Anschutz Medical Campus

    Aurora, Colorado

    Call 720-848-5300

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Show all 69 locations

  • Pasquerilla Healthcare Center - Georgetown University

    Washington D.C., District of Columbia

    Call 202-444-8830

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  • Advent Health Medical Group Advanced Lung Disease

    Orlando, Florida

    Call 407-303-3638

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  • Intercoastal Medical Group

    Sarasota, Florida

    Call 941-379-1799

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  • NCH Research Institute

    Naples, Florida

    Call 239-624-8387

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  • Tampa General Hospital/University of South Florida Health

    Tampa, Florida

    Call 813-821-8038

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  • University of Florida

    Gainesville, Florida

    Call 352-273-8740

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  • Weston Hospital - Cleveland Clinic Florida

    Weston, Florida

    Call 877-463-2010

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  • Southeastern Cardiology Associates

    Columbus, Georgia

    Call 706-243-4500

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  • Emory University

    Atlanta, Georgia

    I'm interested

  • Northwestern University

    Chicago, Illinois

    I'm interested

  • Advocate Christ Medical Center

    Oak Lawn, Illinois

    Call 708-636-7575

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  • Loyola University Medical Center

    Maywood, Illinois

    Call 888-584-7888

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  • Ascension St. Vincent

    Indianapolis, Indiana

    Call 317-338-6666

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  • University of Kansas Medical Center

    Kansas City, Kansas

    Call 913-588-6045

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  • Norton Pulmonary Specialists

    Louisville, Kentucky

    Call 502-587-8000

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  • University Medical Center - New Orleans

    New Orleans, Louisiana

    Call 504-568-4634

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  • University of Maryland Medical Center

    Baltimore, Maryland

    Call 410-225-8301

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  • Corewell Health Beamont Troy Hospital

    Troy, Michigan

    Call 248-964-9490

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  • Mayo Clinic - Rochester

    Rochester, Minnesota

    Call 507-284-2511

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  • Washington University School of Medicine

    St Louis, Missouri

    Call 314-454-8764

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  • Dartmouth Hitchcock Medical Center

    Lebanon, New Hampshire

    Call 603-650-5533

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  • Morristown Medical Center

    Morristown, New Jersey

    Call 973-971-4179

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  • HMH Jersey Shore University Medical Ctr.

    Neptune City, New Jersey

    Call 732-775-9075

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  • University of New Mexico Health Sciences Center

    Albuquerque, New Mexico

    Call 505-272-4751

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  • New York Presbyterian Hospital - Weill Cornell Medicine

    New York, New York

    Call 646-962-2333

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  • New York University Langone Medical Center

    New York, New York

    Call 212-263-1260

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  • Northwell Health

    New Hyde Park, New York

    Call 516-465-5433

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  • University of Rochester Medicine

    Rochester, New York

    Call 585-275-4861

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  • East Carolina University Health

    Greenville, North Carolina

    Call 252-744-1600

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  • University of North Carolina at Chapel Hill

    Chapel Hill, North Carolina

    Call 984-974-5703

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  • Pulmonix, LLC

    Greensboro, North Carolina

    Call 336-522-8999

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  • Wakemed Health and Hospital

    Raleigh, North Carolina

    Call 919-350-8000

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  • Duke University School of Medicine

    Durham, North Carolina

    Call 919-620-5300

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  • University Hospitals Cleveland Medical Center

    Cleveland, Ohio

    Call 440-435-3029

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  • The Cleveland Clinic

    Cleveland, Ohio

    Call 216-444-6503

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  • Ohio State Richard M. Ross Heart Hospital

    Columbus, Ohio

    Call 614-293-8000

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  • University of Cincinnati Medical Center

    Cincinnati, Ohio

    Call 513-475-8523

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  • Oklahoma Heart Institute

    Tulsa, Oklahoma

    Call 918-574-9003

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  • The University of Oklahoma Health Sciences Center

    Oklahoma City, Oklahoma

    Call 405-271-6253

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  • Oregon Health & Science University

    Portland, Oregon

    Call 503-297-3778

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  • Summit Health

    Bend, Oregon

    Call 541-382-2811

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  • Legacy Research Institute

    Portland, Oregon

    Call 503-413-5702

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  • Temple University Hospital

    Philadelphia, Pennsylvania

    I'm interested

  • Temple Lung Center

    Philadelphia, Pennsylvania

    I'm interested

  • St. Luke's University Health Network

    Bethlehem, Pennsylvania

    Call 484-526-3890

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  • University of Pennsylvania

    Philadelphia, Pennsylvania

    I'm interested

  • Thomas Jefferson University - Sidney Kimmel Medical College

    Philadelphia, Pennsylvania

    Call 215-955-6983

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  • AnMed Health

    Anderson, South Carolina

    Call 864-512-5667

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  • Medical University of South Carolina

    Charleston, South Carolina

    Call 843-792-9200

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  • StatCare Pulmonary Consultants and Center for Biomedical Research

    Knoxville, Tennessee

    Call 865-934-2670

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  • UT Southwest Medical Center Heart and Lung Clinic

    Dallas, Texas

    Call 214-645-6616

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  • Baylor University Medical Center

    Dallas, Texas

    Call 214-820-6856

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  • Houston Methodist

    Houston, Texas

    Call 713.790.3311

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  • University of Texas Health Science Center at Houston

    Houston, Texas

    Call 832-325-7100

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  • University of Utah Health

    Salt Lake City, Utah

    Call 801-581-2000

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  • Intermountain Medical Center

    Murray, Utah

    Call 801-507-4800

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  • Pulmonary Associates of Richmond, Inc.

    Richmond, Virginia

    Call 804-320-4243

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  • Inova Medical Group

    Falls Church, Virginia

    Call 703-776-2986

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  • Virginia Commonwealth University

    Richmond, Virginia

    Call 804-828-7929

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  • Sentara Norfolk General Hospital

    Norfolk, Virginia

    Call 757-388-9138

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  • Marshall Health

    Huntington, West Virginia

    Call 304-691-1000

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  • University of Wisconsin Hospital and Clinics

    Madison, Wisconsin

    Call 608-263-7203

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  • Aurora St. Luke's Medical Center

    Milwaukee, Wisconsin

    Call 414-646-2438

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  • Medical College of Wisconsin

    Milwaukee, Wisconsin

    Call 414-955-7040

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Who can participate

Inclusion criteria

  • ✓1. Adults aged 18 years or older
  • ✓2. Diagnosis of fibrotic ILD based on high-resolution computed tomography imaging, including but not limited to:
  • ✓1. Idiopathic interstitial pneumonia, including idiopathic pulmonary fibrosis
  • ✓2. Autoimmune ILD
  • ✓3. Chronic hypersensitivity pneumonitis
  • ✓4. Nonspecific interstitial pneumonia
  • ✓5. Occupational lung disease
  • ✓6. Combined pulmonary fibrosis and emphysema with fibrosis greater than the extent of emphysema on lung imaging as determined by the Investigator
  • ✓3. For patients to be eligible for Cohorts 1 to 3: RHC confirmed PH (mean pulmonary artery pressure \>20 mmHg, pulmonary artery wedge pressure
  • ✓≤15 mmHg, pulmonary vascular resistance \>2 WU).
  • ✓4. For patients to be eligible for Cohort 1, they must not be receiving inhaled treprostinil at Baseline.
  • ✓5. 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. ≤90 days prior to Baseline 6. For patients to be eligible for Cohort 3, they must be receiving Tyvaso/Tyvaso DPI at Baseline and for \>90 days prior to Baseline. 7. For patients to be eligible for Cohort 4: Prior RHC not meeting the definition of PH as described in Inclusion Criterion 3 but has a pulmonary artery wedge pressure ≤15 mmHg. 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
  • ✕a. In cases in which a patient has a diagnosis of PH-ILD along with a concomitant diagnosis of another PH group (eg, Group 1), enrollment may be permitted at the Investigator's discretion if, in their clinical judgment, PH-ILD is the predominant driver of the patient's PH.
  • ✕2. Confirmed diagnosis of Group 3 PH associated with lung diseases and or hypoxia other than fibrotic ILD, as outlined in Inclusion Criterion 2.
  • ✕3. Patients receiving inhaled treprostinil (Yutrepia™) at Baseline. Patients receiving other forms of PH therapy will be eligible for enrollment.

Only the research team can confirm whether you qualify. The intake questionnaire is the best way to find out.

Completing a questionnaire on Clinably does not enroll you in a clinical trial or confirm your eligibility. Only the research team can determine whether you qualify to participate. These results are based on the information you provide and are intended to help you start a conversation with the research team.

Trial data sourced from ClinicalTrials.gov.