Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry (PA-IPF)

This study is currently recruiting participants. (see Contacts and Locations)
Verified January 2016 by University of Pittsburgh
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
ClinicalTrials.gov Identifier:
NCT00540475
First received: October 3, 2007
Last updated: January 4, 2016
Last verified: January 2016
  Purpose
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
Idiopathic Pulmonary Fibrosis

Study Type: Observational [Patient Registry]
Study Design: Observational Model: Case Control
Time Perspective: Prospective
Target Follow-Up Duration: 5 Years
Official Title: The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry

Resource links provided by NLM:


Further study details as provided by University of Pittsburgh:

Primary Outcome Measures:
  • IPF Disease Course [ Time Frame: 5 years ] [ Designated as safety issue: No ]
    Monitor IPF disease course


Estimated Enrollment: 9999
Study Start Date: September 2007
Estimated Study Completion Date: November 2050
Estimated Primary Completion Date: December 2020 (Final data collection date for primary outcome measure)
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.
  Eligibility

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
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
  Contacts and Locations
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, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00540475

Contacts
Contact: Melinda J Klesen, BA 1-866-9224IPF klesenmj@upmc.edu
Contact: Kathleen O Lindell, PhD, RN 412-624-7225 lindellko@upmc.edu

Locations
United States, Pennsylvania
Milton S. Hershey Medical Center Recruiting
Hershey, Pennsylvania, United States, 17033
Contact: Anne Dimmock, B.A.    717-531-2925    adimmock@hmc.psu.edu   
Principal Investigator: Rebecca Bascom, MD         
University of Pennsylvania Health System Recruiting
Philadelphia, Pennsylvania, United States, 19104
Contact: Victoria Fleck    215-662-3115    fleckv@uphs.upenn.edu   
Principal Investigator: Gregory Tino, M.D.         
Temple University Recruiting
Philadelphia, Pennsylvania, United States, 19140
Contact: Gayle Jones, RN    215-707-1359    gayle.jones@tuhs.temple.edu   
Principal Investigator: Gerard Criner, M.D.         
Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease Recruiting
Pittsburgh, Pennsylvania, United States, 15213
Contact: Melinda J Klesen, B.A.    866-922-4473    klesenmj@upmc.edu   
Contact: Kathleen O Lindell, PhD    412-624-7225    lindellko@upmc.edu   
Principal Investigator: Kevin F Gibson, M.D.         
The Center for Health Research at Giesinger Health System Recruiting
Wilkes Barre, Pennsylvania, United States, 18711
Contact: Rebecca Search, MPH    570-214-9940    rasearch@geisinger.edu   
Principal Investigator: Paul F Simmonelli, M.D.         
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
  More Information

Additional Information:
No publications provided

Responsible Party: Kevin F. Gibson, Professor of Medicine, University of Pittsburgh
ClinicalTrials.gov Identifier: NCT00540475     History of Changes
Other Study ID Numbers: PRO07040328 
Study First Received: October 3, 2007
Last Updated: January 4, 2016
Health Authority: United States: Institutional Review Board

Keywords provided by University of Pittsburgh:
Idiopathic Pulmonary Fibrosis
Interstitial Lung Disease

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

ClinicalTrials.gov processed this record on February 11, 2016