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Evaluation of Patients With Idiopathic Pulmonary Fibrosis (IPF) Through an IPF Registry

This study is ongoing, but not recruiting participants.
Information provided by (Responsible Party):
Rany Condos, MD, New York University School of Medicine Identifier:
First received: September 13, 2005
Last updated: March 31, 2016
Last verified: March 2016
The purpose of this study is to create a database of demographics and samples in idiopathic pulmonary fibrosis.

Idiopathic Pulmonary Fibrosis

Study Type: Observational
Study Design: Observational Model: Case-Only
Time Perspective: Prospective
Official Title: Prospective Evaluation of Patients With Idiopathic Pulmonary Fibrosis Through an IPF Registry

Resource links provided by NLM:

Further study details as provided by New York University School of Medicine:

Primary Outcome Measures:
  • Determine cellular and molecular determinants of IPF [ Time Frame: Long-Term ] [ Designated as safety issue: No ]
    An IPF Registry is being established to assemble sufficient patients with IPF (especially in its earliest stage) for phase I therapeutic protocols. The Registry will incorporate demographic and clinical data for natural history studies; second, research data on physiology, high-resolution CT scan, questionnaires, and blood samples for blood banking to be collected every 6 months for prospective studies on pathophysiology; and third, response to standard therapies will be monitored to determine cellular and molecular relationships to clinical outcome and predictors of survival. This is done in order to better determine cellular and molecular determinants of IPF. This cohort will be large enough to commence a separate phase I protocol with molecular strategies of intervention.

Estimated Enrollment: 20
Study Start Date: November 2004
Estimated Study Completion Date: January 2018
Estimated Primary Completion Date: January 2018 (Final data collection date for primary outcome measure)

Ages Eligible for Study:   Child, Adult, Senior
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients with interstitial lung disease.

Inclusion Criteria

  1. Male or Female greater or equal to age 18.
  2. Referral by physician with the diagnosis of IPF, or interstitial lung disease (IPF considered likely).

Exclusion Criteria

(a) Unwilling or unable to give written informed consent.

  Contacts and Locations
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Please refer to this study by its identifier: NCT00212511

United States, New York
NYU School of Medicine
New York, New York, United States, 10016
Sponsors and Collaborators
New York University School of Medicine
Principal Investigator: Rany Condos, MD NYU School of Medicine, Division of Pulmonary and Critical Care Medicine
  More Information

Responsible Party: Rany Condos, MD, Assistant Professor of Medicine, New York University School of Medicine Identifier: NCT00212511     History of Changes
Other Study ID Numbers: 10386-02 A 
Study First Received: September 13, 2005
Last Updated: March 31, 2016
Health Authority: United States: Institutional Review Board
Individual Participant Data  
Plan to Share IPD: Yes
Plan Description: Data has not been analyzed yet.

Additional relevant MeSH terms:
Idiopathic Pulmonary Fibrosis
Idiopathic Interstitial Pneumonias
Pulmonary Fibrosis
Pathologic Processes
Lung Diseases, Interstitial
Lung Diseases
Respiratory Tract Diseases processed this record on October 26, 2016