Idiopathic Pulmonary Fibrosis and Interstitial Lung Disease Prospective Outcomes Registry

a study on Fibrosis Idiopathic Pulmonary Fibrosis Interstitial Lung Disease

Summary

Eligibility
for people ages 30 years and up (full criteria)
Location
at UC Davis UCLA
Dates
study started
completion around
Principal Investigator
by John Belperio, MD (ucla)Namita Sood, MD (ucdavis)

Description

Summary

This registry will collect data on the strategies used to achieve a diagnosis of Idiopathic Pulmonary Fibrosis (IPF) and Chronic Fibrosing Interstitial Lung Disease with Progressive Phenotype (ILD) and the treatment and management efforts applied throughout study follow-up, clinical outcome events and patient reported outcome data. Blood samples will be collected periodically throughout the study for use in future research efforts. For participants with non-IPF, chronic fibrosing ILD with progressive phenotype, HRCT images will be collected throughout the study for use in future research efforts.

Official Title

Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) and Chronic Fibrosing Interstitial Lung Disease With Progressive Phenotype Prospective Outcomes (IPF-PRO/ILD-PRO) Registry

Keywords

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

Eligibility

You can join if…

Open to people ages 30 years and up

  • Willing and able to provide informed consent
  • Established a new diagnosis of IPF by the enrolling subspecialty center (as defined by ATS/ERS/JRS/ALAT criteria)
  • Age 30 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

You CAN'T join if...

  • 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 a clinical trial at the time of enrollment in this registry

Locations

  • University of California - Los Angeles accepting new patients
    Los Angeles California 90024 United States
  • University of California, Davis accepting new patients
    Sacramento California 95817 United States
  • University of Southern California accepting new patients
    Los Angeles California 90033 United States
  • Stanford University accepting new patients
    Stanford California 94305 United States

Lead Scientists at University of California Health

  • John Belperio, MD (ucla)
    Dr. John A. Belperio holds the Guitiara Pierpoint Endowed Chair in Interstitial Pulmonary Fibrosis.
  • Namita Sood, MD (ucdavis)
    Professor, Pulmonary, Critical Care, and Sleep Medicine, School of Medicine. Authored (or co-authored) 10 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Duke University
ID
NCT01915511
Study Type
Observational [Patient Registry]
Participants
Expecting 2000 study participants
Last Updated