Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry
| Status: | Completed |
|---|---|
| Conditions: | Pulmonary |
| Therapuetic Areas: | Pulmonary / Respiratory Diseases |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 10/13/2018 |
| Start Date: | September 2007 |
| End Date: | July 2018 |
The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry
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.
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.
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.
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.
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
We found this trial at
5
sites
Hershey, Pennsylvania 17033
Principal Investigator: Rebecca Bascom, MD
Phone: 717-531-2925
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1801 N Broad St
Philadelphia, Pennsylvania 19122
Philadelphia, Pennsylvania 19122
(215) 204-7000
Principal Investigator: Gerard Criner, M.D.
Phone: 215-707-1359
Temple University Temple University is many things to many people. A place to pursue life's...
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Philadelphia, Pennsylvania 19104
Principal Investigator: Gregory Tino, M.D.
Phone: 215-662-3115
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Pittsburgh, Pennsylvania 15213
Principal Investigator: Kevin F Gibson, M.D.
Phone: 866-922-4473
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1000 East Mountain Boulevard
Wilkes-Barre, Pennsylvania 18711
Wilkes-Barre, Pennsylvania 18711
Principal Investigator: Paul F Simmonelli, M.D.
Phone: 570-214-9940
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