ClinicalTrials.gov
ClinicalTrials.gov Menu

Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry (PA-IPF)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
ClinicalTrials.gov Identifier: NCT00540475
Recruitment Status : Completed
First Posted : October 8, 2007
Last Update Posted : October 11, 2018
Sponsor:
Collaborators:
Temple University
University of Pennsylvania
Geisinger Clinic
Milton S. Hershey Medical Center
Information provided by (Responsible Party):
Kevin F. Gibson, University of Pittsburgh

Brief Summary:
The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry (PA-IPF) is a cooperative project between five medical centers to coordinate a team of investigators. The aim of this registry will be: 1) To assess the extent of lung fibrosis in the commonwealth of Pennsylvania 2) To provide better access of patients with pulmonary fibrosis in all regions of Pennsylvania to standard of care and diagnosis 3) To facilitate the translation of new therapeutic interventions from the bench to the bedside.

Condition or disease
Idiopathic Pulmonary Fibrosis

Detailed Description:

The University of Pittsburgh Medical Center, Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease is the coordination center for the Pennsylvania Idiopathic Pulmonary Fibrosis Statewide Research Registry, the collaborative institutions include: the University of Pennsylvania Health System, Geisinger Health System, and Penn State Milton S. Hershey Medical Center.

The PA-IPF Registry developed into a web site that contains information for patients, health professionals, and families, as well as an Internet-based database that will store information about patients to provide them with guidance about care, research, and support groups close to the area in which they live.

Benefits for membership in the PA-IPF Registry include:

  • Staying informed about IPF research news, both nationally and locally.
  • Having advance notice of any IPF research in which patients may be eligible to participate.

Study Type : Observational [Patient Registry]
Actual Enrollment : 2000 participants
Observational Model: Case-Control
Time Perspective: Prospective
Target Follow-Up Duration: 5 Years
Official Title: The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry
Study Start Date : September 2007
Actual Primary Completion Date : July 2018
Actual Study Completion Date : July 2018





Primary Outcome Measures :
  1. IPF Disease Course [ Time Frame: 5 years ]
    Monitor IPF disease course



Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF)
Criteria

Inclusion Criteria:

  • IPF diagnosis
  • Sufficient testing results completed for an IPF Diagnosis (screening script)
  • Adults (age > 18 years old)
  • Participants who read and comprehend English language

Exclusion Criteria:

  • Children
  • Prisoner-patients

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00540475


Locations
United States, Pennsylvania
Milton S. Hershey Medical Center
Hershey, Pennsylvania, United States, 17033
University of Pennsylvania Health System
Philadelphia, Pennsylvania, United States, 19104
Temple University
Philadelphia, Pennsylvania, United States, 19140
Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease
Pittsburgh, Pennsylvania, United States, 15213
The Center for Health Research at Giesinger Health System
Wilkes-Barre, Pennsylvania, United States, 18711
Sponsors and Collaborators
University of Pittsburgh
Temple University
University of Pennsylvania
Geisinger Clinic
Milton S. Hershey Medical Center
Investigators
Principal Investigator: Kevin F Gibson, MD Medical Director, Dorothy P. & Richard P. Simmons Center

Additional Information:
Responsible Party: Kevin F. Gibson, Professor of Medicine, University of Pittsburgh
ClinicalTrials.gov Identifier: NCT00540475     History of Changes
Other Study ID Numbers: PRO07040328
First Posted: October 8, 2007    Key Record Dates
Last Update Posted: October 11, 2018
Last Verified: October 2018

Keywords provided by Kevin F. Gibson, University of Pittsburgh:
Idiopathic Pulmonary Fibrosis
Interstitial Lung Disease

Additional relevant MeSH terms:
Fibrosis
Pulmonary Fibrosis
Idiopathic Pulmonary Fibrosis
Idiopathic Interstitial Pneumonias
Pathologic Processes
Lung Diseases
Respiratory Tract Diseases
Lung Diseases, Interstitial