The Daniel and Joan Beren Pennsylvania Idiopathic Pulmonary Fibrosis State Registry
 

The Daniel and Joan Beren Pennsylvania Idiopathic Pulmonary Fibrosis State Registry
Talk to a PA-IPF Coordinator by calling the PA-IPF Hotline  1-866-922-4IPF
A project of the University of Pittsburgh, University of Pennsylvania, Pennsylvania State Miton S. Hershey Medical Center, Temple University, Geisinger Medical System
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What Should I Expect After Contacting the Research Registry?
You will have a one-on-one conversation with a PA-IPF coordinator.

The coordinator will provide you with a brief description of the Registry. If you choose to learn more about the Registry, a discussion about your interest to enroll in the research registry will follow.

If you decide to consent to the registry, the coordinator will ask a series of questions to determine your eligibility: Were you told “you’re diagnosed with IPF?” Were you told that you have any scarring of the lung or fibrosis? Have you been told that you have UIP? If you are able to answer yes to any of the questions above, you are considered an eligible participant.

If you agree to continue further review as an eligible participant, the coordinator will ask:
  1. Were you seen by a Lung Physician?
  2. Have you had a Pulmonary Functions Test (PFT) also known as a breathing test? Have you ever had a CT scan? Have you ever had a bronchoscopy or a lung biopsy?
  3. Have you had a lung transplant?
If you decide to become an authorized participant in the research registry, the coordinator will provide you with instructions to sign consent into the registry. The coordinator will also provide you with continuous information, awareness, and up coming events pertaining to IPF after authorizing your consent to the Research Registry.
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