The Pennsylvania IPF Registry
A key obstacle in the implementation of new therapeutic interventions in Idiopathic Pulmonary Fibrosis (IPF) is the lack of information on the natural history of the disease and its prevalence in all populations. The lack of information causes drug companies to be reluctant to invest resources in studies where the outcomes are unclearly defined and hinders the access to transplant because it is impossible to prioritize patients. It is clear that better diagnosis of IPF will lead to better treatment with oxygen and pulmonary rehabilitation.
IPF specialists and patient advocates in Pennsylvania believe that a state wide registry will be highly effective in providing information about the disease and its prevalence and course in Pennsylvania, as well as provide patients with up-to-date information and access to care that may be missing in underserved populations and regions.
To gain such information, the Commonwealth of Pennsylvania designated a $500,000 grant award in the 2006–2007 budget to the University of Pittsburgh to establish the Pennsylvania Lung Fibrosis Registry.
The aims of this registry will be:
- To assess the extent of lung fibrosis in the commonwealth of Pennsylvania
- To provide better access of patients with pulmonary fibrosis in all regions of Pennsylvania to standard of care and diagnosis
- To facilitate the translation of new therapeutic interventions from the bench to the bedside
- Increase awareness and information of the disease
- Create the first state-wide IPF database open to all patients located within the Commonwealth regardless of their insurance
What will be collected?
- Patient demographics, clinical information, the basis for diagnosis.
- Patients' consent to be contacted on a regular basis for research and for information.
- Permission to obtain clinical information and samples that are obtained within usual clinical care.
- Death and outcome information through patient follow up and social security records.
- A blood sample.
What will be created?
- A database that contains most of patients with IPF in Pennsylvania, that will allow rapid spread of information regarding new discoveries and therapeutics, this will reduce unnecessary complications, and un-indicated therapies.
- A physician network for IPF patient reporting that covers all regions of Pennsylvania including underserved (rural and urban) communities.
- A system for tracking the progression of disease in patients enrolled and offering quick recruitment of patients for clinical studies and new interventions, that will greatly facilitate introduction of new medications, and make Pennsylvania a leading state in drug research.
- A research database that will be available for all investigators in the state and will serve as preliminary data for additional large NIH grants.
What Medical Centers will participate?
These medical centers will provide good coverage of Northern, Eastern, central and rural, and Western Pennsylvania.
- Penn State Medical College, Hershey Medical Center
- University of Pennsylvania, Penn Lung Center
- Temple University, Temple Lung Center and PA-Scope
- Geisinger Center for Health Research and Rural Advocacy and Pulmonary Group
- University of Pittsburgh, Simmons Center for Interstitial Lungs Diseases
Naftali Kaminski, MD from the University of Pittsburgh, Simmons Center for Interstitial Lungs Diseases will be the Registry director and principle investigator.
Co-Investigators will be:
David Fisk, MD, Geisinger Heath System
Gregory Tino, MD—University of Pennsylvania
Gerald Criner, MD—Temple University
Kathleen Lindell, RN, MSN, Simmons Center
Rebecca Bascom, MD, Pennsylvania State University
Walter Stewart—Geisinger Center
TBA—Penn State Medical College
For more information on the registry, call 1-866-922-4473 or visit
http://paipf.medicine.pitt.edu.