Clinical trial NCT00540475: Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry
Official title: The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Idiopathic Pulmonary Fibrosis
Keywords: Idiopathic Pulmonary Fibrosis
Interstitial Lung Disease
Lead sponsor: University of Pittsburgh
Sponsor class: OTHER
Collaborators: name: Temple University
name: University of Pennsylvania
name: Geisinger Clinic
name: Milton S. Hershey Medical Center
First posted: 2007-10-08
Enrollment: 2000
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: CASE_CONTROL
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF)

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 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 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

Primary outcomes:
measure: IPF Disease Course
timeFrame: 5 years
Secondary outcomes:
Other outcomes:
Locations:
city: Hershey
country: United States
facility: Milton S. Hershey Medical Center
state: Pennsylvania
city: Philadelphia
country: United States
facility: University of Pennsylvania Health System
state: Pennsylvania
city: Philadelphia
country: United States
facility: Temple University
state: Pennsylvania
city: Pittsburgh
country: United States
facility: Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease
state: Pennsylvania
city: Wilkes-Barre
country: United States
facility: The Center for Health Research at Giesinger Health System
state: Pennsylvania
Study officials:
affiliation: Medical Director, Dorothy P. & Richard P. Simmons Center
name: Kevin F Gibson, MD
role: PRINCIPAL_INVESTIGATOR
References: