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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:
- Were you
seen by a Lung Physician?
- 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?
- 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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