Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry
- Conditions
- Idiopathic Pulmonary Fibrosis
- Registration Number
- NCT00540475
- Lead Sponsor
- University of Pittsburgh
- 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.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 2000
- IPF diagnosis
- Sufficient testing results completed for an IPF Diagnosis (screening script)
- Adults (age > 18 years old)
- Participants who read and comprehend English language
- Children
- Prisoner-patients
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method IPF Disease Course 5 years Monitor IPF disease course
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (5)
Milton S. Hershey Medical Center
🇺🇸Hershey, 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, United States
Temple University
🇺🇸Philadelphia, Pennsylvania, United States