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Idiopathic Pulmonary Fibrosis, Interstitial Lung DiseaseIPF/ILD-PRONCT01915511

Idiopathic Pulmonary Fibrosis and Interstitial Lung Disease Prospective Outcomes Registry

An observational study of Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease, run by Duke University at 47 sites in United States.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
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Trial summary

The Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) Registry started recruiting in 2014 with the objective of studying Idiopathic Pulmonary Fibrosis. In 2018, the registry expanded to include recruitment of participants with other chronic fibrosing interstitial lung diseases (ILDs) with progressive… Read more about this study

Who is it for?
Ages 21 years and older
How many people
3,000 participants
Where
47 sitesUnited States
Study dates
Jun 2014to Jan 2031
How long will I take part?
5 Years
Phase
Observational
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 21 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

Study population: Subjects with a new diagnosis of IPF or a non- IPF chronic fibrosing ILD established at the time of enrollment in the registry are eligible for participation in the IPF-PRO/ILD-PRO registry if the participant meets the selection criteria.

Who may be able to join

  • Willing and able to provide informed consent
  • Established a new diagnosis (within 12 months) of IPF by the enrolling center.
  • Age 21 years or older, or
  • Diagnosis of a non-IPF ILD of any duration, including, but not limited to Idiopathic Non-Specific Interstitial Pneumonia (iNSIP), Unclassifiable Idiopathic Interstitial Pneumonias (IIPs), Interstitial Pneumonia with Autoimmune Features (IPAF), Autoimmune ILDs such as Rheumatoid Arthritis (RA-ILD) and Systemic Sclerosis (SSc-ILD), Chronic Hypersensitivity Pneumonitis (HP), Sarcoidosis or Exposure-related ILDs such as asbestosis with progressive phenotype during the last 24 months by the enrolling center that meets the following criteria:
  • Chronic fibrosing ILD as defined by reticular abnormality with traction bronchiectasis with or without honeycombing confirmed by chest HRCT scan and/or lung biopsy.
  • Progressive phenotype as defined by fulfilling at least one of the criteria below of fibrotic changes (progression set point) within the last 24 months regardless of treatment considered appropriate in individual ILDs (8):
Show all 15Show fewer
  • decline in FVC % predicted (% pred) based on ≥10% relative decline
  • decline in FVC % pred based on ≥5 - <10% relative decline in FVC combined with worsening of respiratory symptoms as assessed by the site investigator
  • decline in FVC % pred based on ≥5 - <10% relative decline in FVC combined with increasing extent of fibrotic changes on chest imaging (HRCT scan) as assessed by the site investigator
  • decline in DLCO % pred based on≥ 10% relative decline
  • worsening of respiratory symptoms as well as increasing extent of fibrotic changes on chest imaging (HRCT scan) as assessed by the site investigator independent of FVC change.
  • The relative decline for FVC % predicted is calculated using the formula:
  • Relative Decline= (FVC % Pred (Reference)-FVC % Pred (Screening))/(FVC % Pred (Reference))×100%, where FVC % Pred (Reference) is the greatest measurement of FVC % predicted in the 24 months prior to screening and FVC % Pred (Screening) is the measurement of FVC % predicted at screening.
  • The relative decline for DLCO % predicted is calculated using the formula:
  • Relative Decline= (DLCO % Pred (Reference)-DLCO % Pred (Screening))/(DLCO % Pred (Reference))×100%, Where DLCO % Pred (Reference) is the greatest measurement of DLCO % Pred in the 24 months prior to screening and DLCO % Pred (Screening) is the measurement of DLCO % Pred at screening

Who cannot join

  • Malignancy, treated or untreated, other than skin or early -stage prostate cancer, within the past 5 years
  • Currently listed for lung transplantation at the time of enrollment
  • Currently enrolled in an interventional clinical trial at the time of enrollment in this registry
  • For the additional IPF cohort of 1000 individuals, previous enrollment in this registry.

Trial locations and contacts

47 sites in 1 country. Contact the study team or a site near you to ask about taking part.

Rosalia Blanco contact

919-660-0890

rosalia.blanco@duke.edu

47 sites in 1 country

United States47 sites, 39 recruiting

  • University of Michigan

    Ann Arbor, Michigan, 48109

    Active, not recruiting

  • Emory University

    Atlanta, Georgia, 30322

    Tracy Halabi, 404-712-7458, tracy.halaby@emory.edu

    Srihari Veeraraghavan, MD

    Recruiting

  • University of Colorado

    Aurora, Colorado, 80045

    Olivia Brohl, 303-724-0641, Olivia.brohl@cuanschutz.edu

    Joyce Lee, MD

    Recruiting

  • Piedmont Healthcare

    Austell, Georgia, 30106

    Munachi (Muna) Iwotor, 404-291-9062, munachi.iwotor@piedmont.org

    Amy Case, MD

    Recruiting

  • University of Alabama - Birmingham

    Birmingham, Alabama, 35294

    Arnissa Hopson, 205-934-1657, agoggins@uabmc.edu

    Tejaswini Kulkarni, MD

    Recruiting

  • UNC Chapel Hill

    Chapel Hill, North Carolina, 27514

    Jackson Pettee, Jackson_pettee@med.unc.edu

    Jason Lobo, MD

    Recruiting

  • Medical University of South Carolina

    Charleston, South Carolina, 29425

    Audra Wiser, wisera@musc.edu

    Timothy Whelan, MD

    Recruiting

  • University from Virginia

    Charlottesville, Virginia, 22908

    Active, not recruiting

  • University of Chicago

    Chicago, Illinois, 60637

    Vanita Patel, vpatel4@bsd.uchicago.edu

    Mary Strek, MD

    Recruiting

  • University of Cincinnati Medical Center

    Cincinnati, Ohio, 45267

    Active, not recruiting

  • Cleveland Clinic

    Cleveland, Ohio, 44195

    Ron Wehrmann, 2164450574, wehrmar@ccf.org

    Briam Southern, MD

    Recruiting

  • University of Vermont Lung Center

    Colchester, Vermont, 05446

    Active, not recruiting

  • The Ohio State University

    Columbus, Ohio, 43210

    Benjamin Hood, benjamin.hood2@osumc.edu

    John Odackal

    Recruiting

  • University of Texas Southwestern

    Dallas, Texas, 75235

    Maira Ortiz, 214-645-1295, Maira.OrtizBerrio@UTSouthwestern.edu

    John Fitzgerald, MD

    Recruiting

  • Baylor University Medical Center at Dallas

    Dallas, Texas, 75246

    Kristina Perez, 817-922-2570, Kristina.Perez@BSWHealth.org

    Yolanda Mageto, MD

    Recruiting

  • Henry Ford Health

    Detroit, Michigan, 48202

    Deepti Naidu, 313-916-8732, dnaidu1@HFHS.ORG

    Asif Abdul Hameed, MD

    Recruiting

  • Duke University

    Durham, North Carolina, 27705

    Lauren Gray, 919-684-7317, lauren.gray@duke.edu

    Lake Morrison, MD

    Recruiting

  • Northwestern University

    Evanston, Illinois, 60611

    Phillip Cooper, 312-503-0406, p-cooper@northwestern.edu

    Bradford Bemiss, MD

    Recruiting

  • Inova

    Falls Church, Virginia, 22042-3307

    Taruni Maganti, 703-776-3230, Taruni.Maganti@inova.org

    Jared Wilkinson, MD

    Recruiting

  • University of Florida

    Gainesville, Florida, 32610-3175

    Lisbetty Lugo, lisbetty.lugo@medicine.ufl.edu

    Diana Gomez Manjarres, MD

    Recruiting

  • Pulmonix LLC

    Greensboro, North Carolina, 27403

    Mei Zheng, 336-522-8870, mei.zheng@pulmonix.com

    Murali Ramaswamy, MD

    Recruiting

  • Baylor College of Medicine

    Houston, Texas, 77030

    Maria C Perea, Maria.Perea@bcm.edu

    Ivan Rosas, MD

    Recruiting

  • Houston Methodist Lung Center

    Houston, Texas, 77030

    Laura Valecillos Loukidis, 346-238-4637, lvvalecillosloukidis@houstonmethodist.org

    Zeenat Safdar, MD

    Recruiting

  • The University of Texas Health Science Center At Houston

    Houston, Texas, 77030

    Beverly Rios, 713-486-6152, Beverly.Rios@uth.tmc.edu

    Rodeo Abrencillo, MD

    Recruiting

  • University of Mississippi Medical Center

    Jackson, Mississippi, 39216

    Leadeashia Brackett, 601-496-7814, lbrackett@umc.edu

    Kimberly Dobbs, MD

    Recruiting

  • University of Kansas

    Kansas City, Kansas, 66160

    Terminated

  • University of California - Los Angeles

    Los Angeles, California, 90024

    Stephanie Roblero, 310-627-2319, sroblero@mednet.ucla.edu

    John Belperio, MD

    Recruiting

  • University of Southern California

    Los Angeles, California, 90033

    Lynn Fukusima, Lynn.Fukushima@med.usc.edu

    Toby Maher, MD

    Recruiting

  • Loyola University Health System

    Maywood, Illinois, 60153

    Sloan White, swhite29@luc.edu

    Daniel Dilling, MD

    Recruiting

  • The Medical College of Wisconsin

    Milwaukee, Wisconsin, 53226

    Active, not recruiting

  • University of Minnesota

    Minneapolis, Minnesota, 55455

    Mandi DeGrote, 612-626-7609, carl1032@umn.edu

    Hyum Kim, MD

    Recruiting

  • Vanderbilt University

    Nashville, Tennessee, 37232

    James Del Greco, 615-343-7068, james.del.greco@vumc.org

    Justin Hewlett, MD

    Recruiting

  • Yale University

    New Haven, Connecticut, 06520

    Maksym Minasyan, 203-785-4177, maksym.minasyan@yale.edu

    Mridu Gulati, MD

    Recruiting

  • Tulane University

    New Orleans, Louisiana, 70112

    Sandy Ditta, 504-988-4040, sditta@tulane.edu

    Joe Lasky, MD

    Recruiting

  • NYU Medical Center

    New York, New York, 10016

    Active, not recruiting

  • Weill Medical College of Cornell University

    New York, New York, 10065

    Alicia Morris, 646-692-2741, ajm2017@med.cornell.edu

    Kerri Aronson, MD

    Recruiting

  • University of Oklahoma

    Oklahoma City, Oklahoma, 73104

    Maria Mason, 405-271-6173, maria-l-mason@ouhsc.edu

    Jad Kebbe, MD

    Recruiting

  • Temple University

    Philadelphia, Pennsylvania, 19140

    Luis Cardenas-Osorio, 215-707-3311, Luis.Cardenas-Osorio@tuhs.temple.edu

    Rachel Criner, MD

    Recruiting

  • Thomas Jefferson University

    Philadelphia, Pennsylvania, 19144

    Ramya Talluri, BSN, RN, RamyaPriya.Talluri@jefferson.edu

    Ross Summer, MD

    Recruiting

  • Oregon Clinic

    Portland, Oregon, 97220

    Meg Day, 503-963-3182, mday@orclinic.com

    David Hotchkin, MD

    Recruiting

  • University of Utah

    Salt Lake City, Utah, 84108

    Adeline Langer, 801-581-5811, adeline.langer@hsc.utah.edu

    Mary Beth Langer, MD

    Recruiting

  • Washington University

    St Louis, Missouri, 63110

    Mona Noroozi, 314-362-3705, mnoroozi@wustl.edu

    Tonya Russell, MD

    Recruiting

  • Stanford University

    Stanford, California, 94305

    Summer Zhu, 650-724-5424, szhuye@stanford.edu

    Rishi Raj, MD

    Recruiting

  • University of South Florida

    Tampa, Florida, 33606

    Abigail Eglinton, 813-660-6955, ahughes@tgh.org

    Jose D Herazo-Maya, MD

    Recruiting

  • University of Arizona

    Tucson, Arizona, 85721

    Daniel Castaneda-Beltran, 602-827-2347, dcastanedabeltra@arizona.edu

    Sally A Suliman, MD

    Recruiting

  • PMG Research

    Wilmington, North Carolina, 28401

    Active, not recruiting

  • Wake Forest Baptist Health

    Winston-Salem, North Carolina, 27157

    Bob Hmieleski, 336-713-8550, bhmieles@wakehealth.edu

    Andrew Namen, MD

    Recruiting

Other trials in United States

About this study

Official title: Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) and Interstitial Lung Disease Prospective Outcomes (IPF-PRO/ILD-PRO) Registry

The Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) Registry started recruiting in 2014 with the objective of studying Idiopathic Pulmonary Fibrosis. In 2018, the registry expanded to include recruitment of participants with other chronic fibrosing interstitial lung diseases (ILDs) with progressive phenotype also referred to as progressive fibrosing interstitial lung diseases in the Chronic Fibrosis Interstitial Lung Disease with Progressive Phenotype (ILD-PRO) Registry. When the third phase of the registry begins, the IPF-PRO registry will enroll additional patients with idiopathic pulmonary fibrosis. This IPF-PRO registry is a prospective registry that will collect information regarding the natural history, health care interactions, participant reported questionnaire data to assess quality of life, and the methods of treatment of participants with a diagnosis of idiopathic pulmonary fibrosis (IPF) or of another chronic fibrosing interstitial lung disease (ILD) with progressive phenotype established at the enrolling centers. In addition, blood samples and chest image studies will be collected and banked for future research projects.

Read the detailed description

This registry originally enrolled a total of 1002 participants newly diagnosed with IPF and continues to enroll patients with other chronic fibrosing ILDs with newly identified progressive phenotype to reach an enrollment of 1000 patients. Participants will be enrolled in three phases, (IPF-PRO and ILD-PRO) over a span of 8 years at approximately 50 sites experienced in the diagnosis and treatment of ILD in the United States. Enrollment for the original IPF cohort started in 2014 and ended in October 2018, with 1002 total participants enrolled. In the third phase of the registry new enrollment for patients with IPF will restart in 2023-2024 with the plan to enroll up to 1000 new IPF patients, for a total IPF enrollment of 2000. Enrollment for other chronic fibrosing ILDs with newly identified progressive phenotype cohort was initiated in February 2019 and will end when enrollment reaches 1000 participants with the potential of enrolling another 1000 participants with other chronic fibrosing ILDs with newly identified without a progressive phenotype. Data and samples will be collected from participants for approximately 5 years for the IPF cohort. For the chronic fibrosing ILD with progressive phenotype cohort, data and samples will be collected for a minimum of 3 years, up to approximately 5 years. Participant management and treatment decisions will be determined by participants and their health care professionals.

Keywords
Idiopathic pulmonary fibrosis, Pulmonary fibrosis, IPF, Registry, 1199.174, Interstitial Lung Disease, ILD, Interstitial Lung Disease with Progressive Phenotype
Medical subject headings
Idiopathic Pulmonary Fibrosis, Lung Diseases, Interstitial, Pulmonary Fibrosis

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

Study groups in NCT01915511
Study groupRoleWhat they receive
Subjects with a new IPF diagnosisSubjects with a new diagnosis of IPF established at the time of enrollment in the registry
Subjects with a non-IPF ILD diagnosisSubjects with a diagnosis of a non-IPF ILD of any duration, including, but not limited to Idiopathic Non-Specific Interstitial Pneumonia (iNSIP), Unclassifiable Idiopathic Interstitial Pneumonias (IIPs), Interstitial Pneumonia with Autoimmune Features (IPAF), Autoimmune ILDs such as Rheumatoid Arthritis (RA-ILD) and Systemic Sclerosis (SSc-ILD), Chronic Hypersensitivity Pneumonitis (HP), Sarcoidosis or Exposure-related ILDs such as asbestosis with progressive phenotype
New Subjects with a new IPF diagnosisSubjects with a new diagnosis of IPF established at the time of enrollment in the registry not previously enrolled in the registry.

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Data on natural history of IPF & non-IPF chronic fibrosing ILD

    Characterize and describe the natural history of patients with a recent confirmed diagnosis of IPF, with emphasis on demographics, co-morbidities, medications, and risks for disease progression or death.

    Measured: End of Study (3 years after last patient will be enrolled)

  2. Data on current practice patterns for diagnosis of IPF & non-IPF chronic fibrosing ILD

    Understand the current practice patterns for diagnosis of IPF \& non-IPF chronic fibrosing ILD

    Measured: End of Study (3 years after last patient will be enrolled)

  3. Data on impact of IPF & non- IPF chronic fibrosing ILD on patient quality of life.

    Describe the impact of IPF \& non- IPF chronic fibrosing ILD on patient quality-of-life (QOL).

    Measured: End of Study (3 years after last patient will be enrolled)

  4. Blood samples for future research.

    Collect longitudinal bio-samples for future research on disease presentation, progression, and subject response to clinical interventions.

    Measured: End of Study (3 years after last patient will be enrolled)

  5. HRCT images for future research (for non-IPF chronic fibrosing ILD, and new IPF patients cohort)

    Collect longitudinal HRCT images for future research

    Measured: End of Study (3 years after last patient will be enrolled)

Secondary outcomes (2)

  1. Data on management practices compared to existing guidelines.

    Compare disease-specific management practices with existing guidelines.

    Measured: End of Study (3 years after last patient will be enrolled)

  2. Data on center-specific practices on outcomes.

    Determine the influence of center-specific practices on patient outcomes.

    Measured: End of Study (3 years after last patient will be enrolled)

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted5 Aug 2013 (estimated)
  2. Study startJun 2014
  3. Primary completionJan 2028 (estimated)
  4. Study completionJan 2031 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
3,000 participants (estimated)
Target duration
5 Years
IDs, dates and publications
ClinicalTrials.gov ID
NCT01915511
Sponsor's protocol ID
Pro00046131
Other IDs
1199.174
Acronym
IPF/ILD-PRO
Status last verified
Jul 2026
First submitted
31 Jul 2013
Last updated
12 Aug 2026
Results posted
No
Data monitoring committee
No

Publications

  • MacMurdo MG, Wojdyla DM, Gassett A, Kaufman JD, Raghu G, Redlich CA, Patel DC, Neely ML, Snyder LD, Gulati M, Sack C; IPF-PRO Registry investigators. Short-term air pollution exposure and hospitalizations in idiopathic pulmonary fibrosis: data from the IPF-PRO Registry. Ann Am Thorac Soc. 2026 Sep 12:aaoag285. doi: 10.1093/annalsats/aaoag285. Online ahead of print.

    PubMed 42730644

  • Neely ML, Todd JL, Snyder LD, Li P, Olson AL; IPF-PRO Registry Investigators *. Trajectories of Health-Related Quality of Life in Patients With Idiopathic Pulmonary Fibrosis. CHEST Pulm. 2024 Dec 27;3(4):100133. doi: 10.1016/j.chpulm.2024.100133. eCollection 2025 Dec.

    PubMed 42548385

  • Shetty S, Swaminathan AC, Li P, Neely ML, Olson AL, Snyder LD; ILD-PRO Registry investigators. Workplace Productivity Loss in Patients with Progressive Pulmonary Fibrosis: Data from the ILD-PRO Registry. Lung. 2026 May 27;204(1):32. doi: 10.1007/s00408-026-00895-x.

    PubMed 42201372

  • Swaminathan AC, Mulder H, Neely ML, Schmid R, Belperio JA, Patel NM, Palmer SM, Todd JL. Expression of complement pathway genes is associated with progression of idiopathic pulmonary fibrosis. Respir Res. 2026 Mar 25;27(1):196. doi: 10.1186/s12931-026-03641-2.

    PubMed 41882705

  • Menon AA, Gansen B, Mulder H, Neely ML, Papavasileiou P, Salisbury ML, Southern BD, Hesslinger C, Leonard TB, Meissner F, Todd JL. Mass spectrometry-based peripheral blood proteomics for biomarker discovery in idiopathic pulmonary fibrosis. Respir Res. 2025 Oct 22;26(1):294. doi: 10.1186/s12931-025-03377-5.

    PubMed 41126189

  • Swaminathan AC, Weber JM, Todd JL, Palmer SM, Neely ML, Whelan TP, Kim GHJ, Leonard TB, Goldin J. Extent of lung fibrosis is of greater prognostic importance than HRCT pattern in patients with progressive pulmonary fibrosis: data from the ILD-PRO registry. Respir Res. 2025 Feb 28;26(1):73. doi: 10.1186/s12931-025-03136-6.

    PubMed 40022059

  • Oldham JM, Neely ML, Wojdyla DM, Gulati M, Li P, Patel DC, Palmer SM, Todd JL; IPF-PRO Registry Investigators. Changes in Lung Function and Mortality Risk in Patients With Idiopathic Pulmonary Fibrosis. Chest. 2025 Aug;168(2):415-422. doi: 10.1016/j.chest.2025.02.018. Epub 2025 Feb 26.

    PubMed 40020995

  • Sack C, Wojdyla DM, MacMurdo MG, Gassett A, Kaufman JD, Raghu G, Redlich CA, Li P, Olson AL, Leonard TB, Todd JL, Neely ML, Snyder LD, Gulati M; IPF-PRO Registry investigators. Long-Term Air Pollution Exposure and Severity of Idiopathic Pulmonary Fibrosis: Data from the Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) Registry. Ann Am Thorac Soc. 2025 Mar;22(3):378-386. doi: 10.1513/AnnalsATS.202404-382OC.

    PubMed 39531618

  • Wang L, Wu P, Liu Y, Patel DC, Leonard TB, Zhao H. Clustering-aided prediction of outcomes in patients with idiopathic pulmonary fibrosis. Respir Res. 2024 Oct 23;25(1):383. doi: 10.1186/s12931-024-03015-6.

    PubMed 39443991

  • Lobo LJ, Liu Y, Li P, Ramaswamy M, Swaminathan AC, Veeraraghavan S, Fan Y, Neely ML, Palmer SM, Olson AL; ILD-PRO Registry investigatorsdagger. Design and baseline characteristics of the ILD-PRO registry in patients with progressive pulmonary fibrosis. BMC Pulm Med. 2024 Sep 27;24(1):468. doi: 10.1186/s12890-024-03247-8.

    PubMed 39334205

  • Summer R, Todd JL, Neely ML, Lobo LJ, Namen A, Newby LK, Shafazand S, Suliman S, Hesslinger C, Keller S, Leonard TB, Palmer SM, Ilkayeva O, Muehlbauer MJ, Newgard CB, Roman J. Circulating metabolic profile in idiopathic pulmonary fibrosis: data from the IPF-PRO Registry. Respir Res. 2024 Jan 25;25(1):58. doi: 10.1186/s12931-023-02644-7.

    PubMed 38273290

  • Neely ML, Hellkamp AS, Bender S, Todd JL, Liesching T, Luckhardt TR, Oldham JM, Raj R, White ES, Palmer SM. Lung function trajectories in patients with idiopathic pulmonary fibrosis. Respir Res. 2023 Aug 24;24(1):209. doi: 10.1186/s12931-023-02503-5.

    PubMed 37612608

  • Ruan P, Todd JL, Zhao H, Liu Y, Vinisko R, Soellner JF, Schmid R, Kaner RJ, Luckhardt TR, Neely ML, Noth I, Porteous M, Raj R, Safdar Z, Strek ME, Hesslinger C, Palmer SM, Leonard TB, Salisbury ML. Integrative multi-omics analysis reveals novel idiopathic pulmonary fibrosis endotypes associated with disease progression. Respir Res. 2023 May 31;24(1):141. doi: 10.1186/s12931-023-02435-0.

    PubMed 37344825

  • Swaminathan AC, Hellkamp AS, Neely ML, Bender S, Paoletti L, White ES, Palmer SM, Whelan TPM, Dilling DF; Idiopathic Pulmonary Fibrosis Prospective Outcomes Registry investigators. Disparities in Lung Transplant among Patients with Idiopathic Pulmonary Fibrosis: An Analysis of the IPF-PRO Registry. Ann Am Thorac Soc. 2022 Jun;19(6):981-990. doi: 10.1513/AnnalsATS.202105-589OC.

    PubMed 35073248

  • Kim HJ, Snyder LD, Neely ML, Hellkamp AS, Hotchkin DL, Morrison LD, Bender S, Leonard TB, Culver DA; IPF-PRO Registry investigators. Clinical Outcomes of Patients with Combined Idiopathic Pulmonary Fibrosis and Emphysema in the IPF-PRO Registry. Lung. 2022 Feb;200(1):21-29. doi: 10.1007/s00408-021-00506-x. Epub 2022 Jan 7.

    PubMed 34997268

Questions about this trial

What is this clinical trial studying?

An observational study of Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease, run by Duke University at 47 sites in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 15 inclusion and 4 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 12 Aug 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 47 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Rosalia Blanco (919-660-0890, rosalia.blanco@duke.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Data on natural history of IPF & non-IPF chronic fibrosing ILD (time frame: End of Study (3 years after last patient will be enrolled)). The study lists 5 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT01915511, which also lists 23 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 12 Aug 2026.

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