Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry

Idiopathic Pulmonary Fibrosis Clinical Trial

— PA-IPF  

Official title:

The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT00540475
• Other study ID #: PRO07040328
• Status: Completed
• Start date: September 2007
• Est. completion date: July 2018

Study information

• Verified date: October 2018
• Source: University of Pittsburgh
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

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.

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 2000
• Est. completion date: July 2018
• Est. primary completion date: July 2018
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

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

Locations

Country	Name	City	State
United States	Milton S. Hershey Medical Center	Hershey	Pennsylvania
United States	Temple University	Philadelphia	Pennsylvania
United States	University of Pennsylvania Health System	Philadelphia	Pennsylvania
United States	Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease	Pittsburgh	Pennsylvania
United States	The Center for Health Research at Giesinger Health System	Wilkes-Barre	Pennsylvania

Sponsors (5)

Lead Sponsor	Collaborator
University of Pittsburgh	Geisinger Clinic, Milton S. Hershey Medical Center, Temple University, University of Pennsylvania

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	IPF Disease Course	Monitor IPF disease course	5 years

External Links

•   Pennsylvania Idiopathic Pulmonary Fibrosis Registry