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A Pulmonary Fibrosis Research Contact Registry

Kaitlin Fier, Amanda Belkin, Susan Baird, Brenda Crowe, Linda Eres, Marjorie Korn, Leslie Maginn, Mark McCormick, Thomas Vierzba, Frederick S Wamboldt and Jeffrey J Swigris

Background: Pulmonary fibrosis (PF) is a chronic, progressive disease that causes dyspnea-induced limitations in physical activity and impaired quality of life. PF has several etiologies that can be used to generate subgroups under the PF umbrella. One of the largest subgroups is composed of patients with idiopathic pulmonary fibrosis (IPF)-a specific diagnosis rendered when a particular pattern of scarring is identified on high-resolution computed tomography images or in surgical lung biopsy specimens. The majority of PF research has focused on patients with IPF, and drug trials enroll only select IPF patients who meet certain inclusion criteria.
Objective: To describe a PF contact registry designed as a recruitment tool for interested investigators to use in prospective research.
Methods: In our patient-centered research program, the P3F or Participation Program for Pulmonary Fibrosis, we have designed a secure, nationwide registry to store contact information of PF patients and their informal caregivers who wish to be made aware of research studies for which they may qualify.
Results: In the first four months, 102 people have enrolled in the registry. The majority are patients with PF, but 12 informal caregivers have registered as well.
Conclusions: Our registry holds a database of contact information for PF patients and their caregivers who wish to participate in research. It serves as an excellent recruitment tool for prospective studies, and we invite other investigators to contact us if they would like to take advantage of this resource.