Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry (PA-IPF)
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.
Idiopathic Pulmonary Fibrosis
|Study Design:||Observational Model: Case Control
Time Perspective: Retrospective
|Official Title:||The Pennsylvania Idiopathic Pulmonary Fibrosis State-wide Research Registry|
|Study Start Date:||September 2007|
|Estimated Study Completion Date:||November 2050|
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.
|Contact: Trisha R Black, BA||1-866-9224IPFemail@example.com|
|Contact: Mindy J Seagriff, BAfirstname.lastname@example.org|
|United States, Pennsylvania|
|Milton S. Hershey Medical Center||Recruiting|
|Hershey, Pennsylvania, United States, 17033|
|Contact: Anne Dimmock, B.A. 717-531-2925 email@example.com|
|Principal Investigator: Rebecca Bascom, MD|
|Philadelphia, Pennsylvania, United States, 19140|
|Contact: Gayle Jones, RN 215-707-1359 firstname.lastname@example.org|
|Principal Investigator: Gerard Criner, M.D.|
|University of Pennsylvania Health System||Recruiting|
|Philadelphia, Pennsylvania, United States, 19104|
|Contact: Victoria Fleck 215-662-3115 email@example.com|
|Contact: Lisa Gardo, RN 215-615-0276 firstname.lastname@example.org|
|Principal Investigator: Gergory Tino, M.D.|
|Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease||Recruiting|
|Pittsburgh, Pennsylvania, United States, 15213|
|Contact: Trisha R Black, B.A. 412-605-1550 email@example.com|
|Contact: Kathleen O Lindell, PhD 412-802-3274 firstname.lastname@example.org|
|Principal Investigator: Naftali Kaminski, M.D.|
|The Center for Health Research at Giesinger Health System||Recruiting|
|Wilkes Barre, Pennsylvania, United States, 18711|
|Contact: Rebecca Search, MPH 570-214-9940 email@example.com|
|Contact: Mary Ann Blosky, RN 570-214-9544 firstname.lastname@example.org|
|Principal Investigator: Paul F Simmonelli, M.D.|
|Principal Investigator:||Naftali Kaminski, MD||Director, Dorothy P. & Richard P. Simmons Center|