Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry — PA-IPF  

Idiopathic Pulmonary Fibrosis Clinical Trial

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

Status Completed

Clinical Trial 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.

Clinical Trial 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. ;

Related Conditions & MeSH terms

• Fibrosis
• Idiopathic Interstitial Pneumonias
• Idiopathic Pulmonary Fibrosis
• Pulmonary Fibrosis

• NCT number: NCT00540475
• Study type: Observational [Patient Registry]
• Source: University of Pittsburgh
• Status: Completed
• Start date: September 2007
• Completion date: July 2018