Clinical Trial: Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]

Official Title: The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry

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.

Detailed Summary:

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.

Sponsor: University of Pittsburgh

Current Primary Outcome: IPF Disease Course [ Time Frame: 5 years ]

Monitor IPF disease course


Original Primary Outcome:

Current Secondary Outcome:

Original Secondary Outcome:

Information By: University of Pittsburgh

Dates:
Date Received: October 3, 2007
Date Started: September 2007
Date Completion: November 2050
Last Updated: January 4, 2016
Last Verified: January 2016