DeciPHer-ILD: A Real-world Patient Registry in Group 3 Pulmonary Hypertension Associated With Interstitial Lung Disease (PH-ILD)
Who can join
As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.
- Age
- 18 Years and older
- Sex
- All sexes
- Healthy volunteers
- Not accepted
- Compensation
- Not stated
Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.
What to expect
No one can promise a trial will help you personally — that is what the research is trying to find out.
What participation involves
- Time periods mentioned: 5 years
Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.
Show the study's own words
- "This patient registry will follow patients for up to 5 years after enrollment."
- Compensation
- Not stated
- Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
- Participants are monitored closely by the research team throughout the study.
- Some participants may receive access to an investigational treatment, which is still being studied.
- Your participation helps researchers learn whether this approach could help future patients.
About this study
In plain language
This study collects health information over time from adults with interstitial lung disease (ILD), which causes lung scarring. It includes people with and without pulmonary hypertension (PH), or high blood pressure in the lungs. It is a patient registry, not a test of a new treatment.
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).
Compensation is read from the study's own description and may be missing — always confirm with the study team.
Eligibility
Who can join
- You must be age 18 or older.
- A detailed CT scan must show ILD with lung scarring. If you also have emphysema, the study doctor must find more scarring than emphysema on the scan.
- For groups 1–3, a right-heart catheter test must confirm PH. This test measures heart and lung blood pressures. Required results are mean lung artery pressure above 20 mmHg, wedge pressure at or below 15 mmHg, and lung blood vessel resistance above 2 WU.
- For group 1, you must not be taking inhaled treprostinil at the start of the study.
- For group 2, you must start Tyvaso or Tyvaso DPI at the study start or have started it within the 90 days before.
- For group 3, you must be taking Tyvaso or Tyvaso DPI at the study start and have started it more than 90 days before.
- For group 4, an earlier right-heart catheter test must not meet the PH limits listed for groups 1–3. Wedge pressure must be at or below 15 mmHg.
- You must be willing and able to give informed consent and complete surveys in English or Spanish. You may also take part in other studies.
Who can't join
- You have confirmed PH in group 1, 2, 4, or 5, which are other types of PH. The study doctor may allow you to join if ILD is the main cause of your PH.
- You have group 3 PH caused by a lung disease or low oxygen other than ILD with scarring.
- You are taking inhaled treprostinil called Yutrepia at the study start. Other PH treatments are allowed.
Simplified for readability. The official criteria below are what the study team uses.
Official eligibility criteria
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.
Study sites (70)
AL
- University of Alabama at Birmingham · Birmingham, AL 35294Tejaswini Kulkarni, MD · Study contact · 205-934-3411More trials in Birmingham
AZ
- Banner Health - University Medical Center Phoenix · Phoenix, AZ 85006Karim El-Kersh, MD · Study contact · 602-229-2200More trials in Phoenix
CA
- Cedars-Sinai Medical Center · Los Angeles, CA 90048Yuri Matusov, MD · Study contact · 310-423-8784More trials in Los Angeles
- UC Davis Health Medical Center · Sacramento, CA 95817Namita Sood, MD, FCCP · Study contact · 916-734-8230More trials in Sacramento
CO
- University of Colorado - Anschutz Medical Campus · Aurora, CO 80045Todd Bull, MD · Study contact · 720-848-5300More trials in Aurora
- National Jewish Health · Denver, CO 80206Marjorie George, MD · Study contactBeatrice Kwarteng · Study contact · 303-398-1553 · KWARTENGB@NJHealth.orgMore trials in Denver
DC
- Pasquerilla Healthcare Center - Georgetown University · Washington D.C., DC 20007Tunay Kuru, MD · Study contact · 202-444-8830More trials in Washington D.C.
FL
- University of Florida · Gainesville, FL 32610Ali Ataya, MD · Study contact · 352-273-8740More trials in Gainesville
- NCH Research Institute · Naples, FL 34102David Lindner, DO · Study contact · 239-624-8387More trials in Naples
- Advent Health Medical Group Advanced Lung Disease · Orlando, FL 32804Melisa Wilson, DNP, APRN, BC · Study contact · 407-303-3638More trials in Orlando
- Intercoastal Medical Group · Sarasota, FL 34239Ryan Dunn, MD · Study contact · 941-379-1799More trials in Sarasota
- Tampa General Hospital/University of South Florida Health · Tampa, FL 33606Ricardo Restrepo-Jaramillo, MD · Study contact · 813-821-8038More trials in Tampa
- Weston Hospital - Cleveland Clinic Florida · Weston, FL 33331David Zisman, MD · Study contact · 877-463-2010More trials in Weston
GA
- Emory University · Atlanta, GA 30322Aaron Trammell, MD, MSc · Study contact · 404-778-5736More trials in Atlanta
- Southeastern Cardiology Associates · Columbus, GA 31904Hunter Champion, MD, PhD, FAHA · Study contact · 706-243-4500More trials in Columbus
IL
- Northwestern University · Chicago, IL 60611Michael Cuttica, MD · Study contact · 312-695-4077More trials in Chicago
- Loyola University Medical Center · Maywood, IL 60153Daniel Dilling, MD · Study contact · 888-584-7888More trials in Maywood
- Advocate Christ Medical Center · Oak Lawn, IL 60453Muhyaldeen Dia, MD · Study contact · 708-636-7575More trials in Oak Lawn
IN
- Ascension St. Vincent · Indianapolis, IN 46260Sangita Sudharshan, MD · Study contact · 317-338-6666More trials in Indianapolis
KS
- University of Kansas Medical Center · Kansas City, KS 66160Leslie Spikes, MD · Study contact · 913-588-6045More trials in Kansas City
KY
- Norton Pulmonary Specialists · Louisville, KY 40202John McConnell, MD · Study contact · 502-587-8000More trials in Louisville
LA
- University Medical Center - New Orleans · New Orleans, LA 70112Amita Krishnan, MD · Study contact · 504-568-4634More trials in New Orleans
MD
- University of Maryland Medical Center · Baltimore, MD 21201Steven Cassady, MD · Study contact · 410-225-8301More trials in Baltimore
MI
- Corewell Health Beamont Troy Hospital · Troy, MI 48085-1128Samuel Allen, DO · Study contact · 248-964-9490More trials in Troy
MN
- Mayo Clinic - Rochester · Rochester, MN 55905Hilary DuBrock, MD · Study contact · 507-284-2511More trials in Rochester
MO
- Washington University School of Medicine · St Louis, MO 63110Robert Case, MD · Study contact · 314-454-8764More trials in St Louis
NC
- University of North Carolina at Chapel Hill · Chapel Hill, NC 27514Hubert Ford, MD · Study contact · 984-974-5703More trials in Chapel Hill
- Duke University School of Medicine · Durham, NC 27710Sudarshan Rajagopal, MD, PhD · Study contact · 919-620-5300More trials in Durham
- Pulmonix, LLC · Greensboro, NC 27403Matthew Hunsucker, MD · Study contact · 336-522-8999More trials in Greensboro
- East Carolina University Health · Greenville, NC 27834Veeranna Maddipati, MD · Study contact · 252-744-1600More trials in Greenville
- Wakemed Health and Hospital · Raleigh, NC 27610-1231Kishan Parikh, MD · Study contact · 919-350-8000More trials in Raleigh
NH
- Dartmouth Hitchcock Medical Center · Lebanon, NH 03766Jeffrey Stewart, MD · Study contact · 603-650-5533More trials in Lebanon
NJ
- Morristown Medical Center · Morristown, NJ 07960Abhishek Singh, MD, PhD · Study contact · 973-971-4179More trials in Morristown
- HMH Jersey Shore University Medical Ctr. · Neptune City, NJ 07753Eric Costanzo, DO · Study contact · 732-775-9075More trials in Neptune City
NM
- University of New Mexico Health Sciences Center · Albuquerque, NM 87131Lana Melendres-Groves, MD · Study contact · 505-272-4751More trials in Albuquerque
NY
- Northwell Health · New Hyde Park, NY 11042Arunabh Talwar, MD · Study contact · 516-465-5433More trials in New Hyde Park
- New York University Langone Medical Center · New York, NY 10016Roxana Sulica, MD · Study contact · 212-263-1260More trials in New York
- New York Presbyterian Hospital - Weill Cornell Medicine · New York, NY 10021Robert Kaner, MD · Study contact · 646-962-2333More trials in New York
- University of Rochester Medicine · Rochester, NY 14623R. James White, MD, PhD · Study contact · 585-275-4861More trials in Rochester
OH
- University of Cincinnati Medical Center · Cincinnati, OH 45219Jean Elwing, MD · Study contact · 513-475-8523More trials in Cincinnati
- University Hospitals Cleveland Medical Center · Cleveland, OH 44106Maroun Matta, MD · Study contact · 440-435-3029More trials in Cleveland
- The Cleveland Clinic · Cleveland, OH 44195Alice Goyanes, MD · Study contact · 216-444-6503More trials in Cleveland
- Ohio State Richard M. Ross Heart Hospital · Columbus, OH 43210Elie Homsy, MD · Study contact · 614-293-8000More trials in Columbus
OK
- The University of Oklahoma Health Sciences Center · Oklahoma City, OK 73104Syed Hussain, MD · Study contact · 405-271-6253More trials in Oklahoma City
- Oklahoma Heart Institute · Tulsa, OK 74104Steven Stroud, MD · Study contact · 918-574-9003More trials in Tulsa
OR
- Summit Health · Bend, OR 97701Jeremy Feldman, MD · Study contact · 541-382-2811More trials in Bend
- Legacy Research Institute · Portland, OR 97210Steven Sears, DO · Study contact · 503-413-5702More trials in Portland
- Oregon Health & Science University · Portland, OR 97239Jeffrey Robinson, MD · Study contact · 503-297-3778More trials in Portland
PA
- St. Luke's University Health Network · Bethlehem, PA 18015Douglas Corwin, MD · Study contact · 484-526-3890More trials in Bethlehem
- University of Pennsylvania · Philadelphia, PA 19104Jason Fritz, MD · Study contact · 215-662-8766More trials in Philadelphia
- Thomas Jefferson University - Sidney Kimmel Medical College · Philadelphia, PA 19107Gautam George, MD · Study contact · 215-955-6591More trials in Philadelphia
- Temple Lung Center · Philadelphia, PA 19140Sheila Weaver, DO · Study contact · 800-836-7536More trials in Philadelphia
- Temple University Hospital · Philadelphia, PA 19140Ahmed Sadek, MD · Study contact · 800-836-7536More trials in Philadelphia
SC
- AnMed Health · Anderson, SC 29621Abhijit Raval, MD · Study contact · 864-512-5667More trials in Anderson
- Medical University of South Carolina · Charleston, SC 29425Denise Sese, MD · Study contact · 843-792-9200More trials in Charleston
TN
- StatCare Pulmonary Consultants and Center for Biomedical Research · Knoxville, TN 37909Kunal Gada, MD · Study contact · 865-934-2670More trials in Knoxville
TX
- Baylor University Medical Center · Dallas, TX 75246Susan Mathai, MD · Study contact · 214-820-6856More trials in Dallas
- UT Southwest Medical Center Heart and Lung Clinic · Dallas, TX 75390Kelly Chin, MD · Study contact · 214-645-6616More trials in Dallas
- Houston Methodist · Houston, TX 77030Meagan Chavarria, NP · Study contact · 713-441-7779More trials in Houston
- University of Texas Health Science Center at Houston · Houston, TX 77030Rodeo Abrencillo, MD · Study contact · 832-325-7100More trials in Houston
UT
- Intermountain Medical Center · Murray, UT 84157Erin Blackstock, MD · Study contact · 801-507-4800More trials in Murray
- University of Utah Health · Salt Lake City, UT 84108Emily Beck, MD · Study contact · 801-581-2000More trials in Salt Lake City
VA
- Inova Medical Group · Falls Church, VA 22042Christopher Thomas, MD · Study contact · 703-776-2986More trials in Falls Church
- Sentara Norfolk General Hospital · Norfolk, VA 23507Michael Eggert, MD · Study contact · 757-388-9138More trials in Norfolk
- Pulmonary Associates of Richmond, Inc. · Richmond, VA 23230Shilpa Johri, MD · Study contact · 804-320-4243More trials in Richmond
- Virginia Commonwealth University · Richmond, VA 23298Jared Dyer, DO · Study contact · 804-828-7929More trials in Richmond
WI
- University of Wisconsin Hospital and Clinics · Madison, WI 53792James Runo, MD · Study contact · 608-263-7203More trials in Madison
- Aurora St. Luke's Medical Center · Milwaukee, WI 53215Eric Roberts, MD · Study contact · 414-646-2438More trials in Milwaukee
- Medical College of Wisconsin · Milwaukee, WI 53226Kenneth Presberg, MD · Study contact · 414-955-7040More trials in Milwaukee
WV
- Marshall Health · Huntington, WV 25701Amro Al-Astal, MD · Study contact · 304-691-1000More trials in Huntington