Pulmonary Fibrosis Foundation Patient Registry



Status:Recruiting
Conditions:Pulmonary, Pulmonary, Pulmonary
Therapuetic Areas:Pulmonary / Respiratory Diseases
Healthy:No
Age Range:18 - 99
Updated:12/9/2018
Start Date:March 2016
End Date:October 2021
Contact:Muhammad Ishtiaq, PhD
Email:mishtiaq@umich.edu
Phone:7346153196

Use our guide to learn which trials are right for you!

The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000
patients with interstitial lung disease (ILD) at approximately 40 clinical sites in the US.
The Registry is targeting enrollment of approximately 60% of the 2,000 ILD participants to
have idiopathic pulmonary fibrosis (IPF). The aim of the Registry is to create a cohort of
well-characterized patients with interstitial lung disease (ILD) for participation in
retrospective and prospective research

The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000
patients with interstitial lung disease (ILD) at approximately 40 clinical sites in the US.
The Registry is targeting enrollment of approximately 60% of the 2,000 ILD participants to
have idiopathic pulmonary fibrosis (IPF). The aim of the Registry is to create a cohort of
well-characterized patients with interstitial lung disease (ILD) for participation in
retrospective and prospective research.

Patients who meet inclusion and exclusion criteria and are being treated at a Registry site
can be asked to participate. Patients will be required to read and sign an Institutional
review board(IRB)-approved informed consent document prior to any Registry activity taking
place.

At the time of informed consent, participants will be asked to indicate if they are
interested in being contacted by Registry site personnel for potential participation in
future clinical trials and/or studies. Participants who opt out will not be contacted for
future studies.

No clinical procedures, testing, or diagnostics will be required by virtue of Registry
participation. Participants will permit Registry staff to abstract clinical data obtained as
part of routine clinical care in the diagnosis and treatment of ILD. These data will be
entered into a web-based, electronic data capture (EDC) by the Registry staff to at regular
intervals. Some of these data will be retrospective, having been collected prior to
consenting for the Registry.

Computed tomography (CT) images collected for diagnosis and / or treatment will be
de-identified at the Registry site and uploaded to a secure server that is a 21 Code of
Federal Regulations (CFR) Part 11, Good Clinical Practice (GCP), and HIPAA compliant online
imaging repository.

Participants will be asked to complete patient reported outcome (PRO) surveys related to ILD
symptoms and quality of life at the time of enrollment and during clinical follow-up
visits.Participants who are not seen for clinical follow-up within 12 months will be
contacted by telephone or mail by Registry site personnel to complete the PRO measures.

The University of Michigan Statistical Analysis of Biomedical and Educational Research
(SABER) unit will serve as the Registry Data Coordinating Center and will manage data entered
into a web based, CFR 21 Part 11 compliant electronic data capture (EDC) system by the
Registry sites.

Inclusion Criteria:

1. 18 years old or older

2. Understand and sign the informed consent document

3. ILD Diagnosis must be made / confirmed at a participating Registry center.

1. The diagnostic evaluation must include, at a minimum, a medical history, physical
examination, pulmonary function testing and a computerized tomography (CT) scan
of the chest.

2. If patients exhibit another pulmonary disease (such as emphysema or asthma), the
primary disease must be ILD.

4. Anticipated additional follow up at the Registry center within one year.

Exclusion Criteria:

1. Diagnosed with:

1. Sarcoid

2. Lymphangioleiomyomatosis (LAM)

3. Pulmonary alveolar proteinosis (PAP)

4. Cystic fibrosis (CF)

5. Amyloidosis
We found this trial at
42
sites
Hershey, Pennsylvania 17033
Principal Investigator: Rebecca Bascom, MD
Phone: 717-531-5519
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185 Cambridge Street
Boston, Massachusetts 02114
617-724-5200
Principal Investigator: Andrew Tager, MD
Phone: 617-724-2604
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Boston, MA
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5801 South Ellis Avenue
Chicago, Illinois 60637
 773.702.1234
Principal Investigator: Imre Noth, MD
Phone: 773-834-4053
University of Chicago One of the world's premier academic and research institutions, the University of...
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Chicago, IL
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3300 Gallows Road
Falls Church, Virginia 22042
(703) 776-4001
Principal Investigator: Christopher King, MD
Phone: 703-776-6485
Inova Fairfax Hospital Inova Fairfax Hospital, Inova's flagship hospital, is an 833-bed, nationally recognized regional...
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Falls Church, VA
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7000 Fannin St
Houston, Texas 77030
(713) 500-4472
Principal Investigator: Richard Castriotta, MD
Phone: 713-486-6728
University of Texas Health Science Center at Houston The University of Texas Health Science Center...
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Miami, Florida 33124
(305) 284-2211
Principal Investigator: Marilyn Glassberg, MD
Phone: 305-243-3728
University of Miami A private research university with more than 15,000 students from around the...
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Miami, FL
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4200 Fifth Ave
Pittsburgh, Pennsylvania 15260
(412) 624-4141
Principal Investigator: Daniel Kass, MD
Phone: 412-802-6860
University of Pittsburgh The University of Pittsburgh is a state-related research university, founded as the...
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60 Crittenden Blvd # 70
Rochester, New York 14642
(585) 275-2121
Principal Investigator: R. Matthew Kottmann, MD
Phone: 585-275-4861
University of Rochester The University of Rochester is one of the country's top-tier research universities....
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201 Presidents Circle
Salt Lake City, Utah 84108
801) 581-7200
Principal Investigator: Mary Beth Scholand, MD
Phone: 801-587-7855
University of Utah Research is a major component in the life of the U benefiting...
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Seattle, Washington 98104
(206) 543-2100
Principal Investigator: Ganesh Raghu, MD
Phone: 206-598-4967
Univ of Washington Founded in 1861 by a private gift of 10 acres in what...
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500 S State St
Ann Arbor, Michigan 48109
(734) 764-1817
Principal Investigator: Elizabeth Belloli, MD
Phone: 734-936-8301
University of Michigan The University of Michigan was founded in 1817 as one of the...
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Austell, Georgia 30106
Principal Investigator: Amy Case, MD
Phone: 770-745-1404
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733 North Broadway
Baltimore, Maryland 21205
(410) 955-3182
Principal Investigator: Leann Silhan, MD
Phone: 410-955-4176
Johns Hopkins University School of Medicine Johns Hopkins Medicine (JHM), headquartered in Baltimore, Maryland, is...
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22 S Greene St
Baltimore, Maryland 21201
(410) 328-8667
Principal Investigator: Douglas Corwin
Phone: 410-328-1473
University of Maryland Medical Center Founded in 1823 as the Baltimore Infirmary, the University of...
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Birmingham, Alabama 35294
Principal Investigator: Joao de Andrade, MD
Phone: 205-934-5573
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171 Ashley Avenue
Charleston, South Carolina 29425
843-792-1414
Principal Investigator: Timothy Whelan, MD
Phone: 843-792-3167
Medical University of South Carolina The Medical University of South Carolina (MUSC) has grown from...
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1221 Lee Street
Charlottesville, Virginia 22908
Principal Investigator: Borna Mehrad, MD
Phone: 434-924-9969
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303 East Superior Street
Chicago, Illinois 60611
Principal Investigator: Rishi Raj, MD
Phone: 312-695-6021
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2600 Clifton Ave
Cincinnati, Ohio 45267
(513) 556-6000
Principal Investigator: Francis McCormack, MD
Phone: 513-558-0027
University of Cincinnati The University of Cincinnati offers students a balance of educational excellence and...
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281 W. Lane Ave
Columbus, Ohio 43210
(614) 292-6446
Principal Investigator: Nitin Bhatt, MD
Phone: 614-293-3351
Ohio State University The Ohio State University’s main Columbus campus is one of America’s largest...
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1801 Inwood Rd
Dallas, Texas 75390
(214) 645-3300
Principal Investigator: Craig Glazer, MD
Phone: 214-645-7108
University of Texas Southwestern Medical Center UT Southwestern is an academic medical center, world-renowned for...
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1400 Jackson St
Denver, Colorado 80206
(303) 388-4461
Principal Investigator: Tristan Huie, MD
Phone: 303-398-1912
National Jewish Health National Jewish Health is known worldwide for treatment of patients with respiratory,...
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2301 Erwin Rd
Durham, North Carolina 27710
919-684-8111
Principal Investigator: Lake Morrison, MD
Phone: 919-681-3866
Duke Univ Med Ctr As a world-class academic and health care system, Duke Medicine strives...
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3901 Rainbow Blvd
Kansas City, Kansas 66160
(913) 588-5000
Principal Investigator: Mark Hamblin, MD
Phone: 913-588-6067
University of Kansas Medical Center The University of Kansas Medical Center serves Kansas through excellence...
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10833 Le Conte Avenue
Los Angeles, California 90095
Principal Investigator: Sam Weigt, MD
Phone: 310-794-2466
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500 S Preston St
Louisville, Kentucky
(502) 852-5555
Principal Investigator: Rafael Perez, MD
Phone: 502-852-3184
University of Louisville The University of Louisville is a state supported research university located in...
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200 Southeast Oak Street
Minneapolis, Minnesota 55455
Principal Investigator: Hyun Kim, MD
Phone: 612-626-7609
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2201 West End Ave
Nashville, Tennessee 37232
(615) 322-7311
Principal Investigator: Lisa Lancaster, MD
Phone: 615-343-7068
Vanderbilt University Vanderbilt offers undergraduate programs in the liberal arts and sciences, engineering, music, education...
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New Haven, Connecticut 06520
Principal Investigator: Mridu Gulati, MD
Phone: 203-737-5061
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New Orleans, Louisiana 70112
Principal Investigator: Joseph Lasky, MD
Phone: 504-988-4040
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New York, New York 10021
Principal Investigator: Robert Kaner, MD
Phone: 212-821-0971
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630 W 168th St
New York, New York
212-305-2862
Principal Investigator: Anna Podolanczuk
Phone: 212-342-4551
Columbia University Medical Center Situated on a 20-acre campus in Northern Manhattan and accounting for...
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Philadelphia, Pennsylvania 19140
Principal Investigator: Gerard Criner, MD
Phone: 215-707-1610
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3451 Walnut St
Philadelphia, Pennsylvania 19104
1 (215) 898-5000
Principal Investigator: Mary Kreider, MD, MSCE
Phone: 215-746-4219
Univ of Pennsylvania Penn has a long and proud tradition of intellectual rigor and pursuit...
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Phoenix, Arizona 85013
Principal Investigator: Rajat Walia, MD
Phone: 602-406-3825
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Rochester, Minnesota 55905
Principal Investigator: Andrew Limper, MD
Phone: 507-266-1026
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660 S Euclid Ave
Saint Louis, Missouri 63110
(314) 362-5000
Principal Investigator: Adrian Shifren, MBBCh
Phone: 314-362-9919
Washington University School of Medicine Washington University Physicians is the clinical practice of the School...
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Saint Louis, MO
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San Antonio, Texas
Principal Investigator: Anoop Nambiar, MD
Phone: 210-617-5256
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San Francisco, California 94143
Principal Investigator: Brett Ley, MD
Phone: 415-502-1958
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450 Serra Mall
Stanford, California 94305
(650) 723-2300
Principal Investigator: Joshua Mooney
Phone: 650-725-8083
Stanford University Stanford University, located between San Francisco and San Jose in the heart of...
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Stony Brook, New York 11794
Principal Investigator: Anthony Brehm, MD
Phone: 631-444-9033
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Tucson, Arizona 85721
(520) 621-2211
Principal Investigator: Sachin Chaudhary, MD
Phone: 520-626-5874
University of Arizona The University of Arizona is a premier, public research university. Established in...
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