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Diffuse Lung Disease |

A Pulmonary Fibrosis Research Contact Registry: Report of the First 102 Enrollees

Kaitlin Fier; Amanda Belkin; Susan Baird; Crowe Brenda; Linda Eres; Marjorie Korn; Leslie Maginn; Mark McCormick; Thomas Vierzba; Frederick Wamboldt; Jeffrey Swigris, MS
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National Jewish Health, Denver, CO


Chest. 2014;146(4_MeetingAbstracts):368A. doi:10.1378/chest.1993555
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Abstract

SESSION TITLE: Interstitial Lung Disease Posters II

SESSION TYPE: Original Investigation Poster

PRESENTED ON: Wednesday, October 29, 2014 at 01:30 PM - 02:30 PM

PURPOSE: 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. Here we describe a PF contact registry designed as a recruitment tool for prospective research, including a study of supplemental oxygen in PF (of any cause).

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 PF, but 12 informal caregivers (ICs) have registered as well. Eighty-six patient enrollees gave their state of residence: they hail from 30 different states; 10 are from California, and six are from each of Colorado, Texas, Virginia and Washington. Among the 85 patients who gave their year of diagnosis, 67 were diagnosed in 2009 or later. The majority of patient enrollees report their PF as being idiopathic in etiology. Fifty-seven percent of patient enrolees are male. Six of the IC enrollees are men and six are women.

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.

CLINICAL IMPLICATIONS: We are acutely aware that many patients do not have access to a PF center of excellence and are uninformed about advances in the PF field and research opportunities. The P3F contact registry allows them the chance to play a role in elevating the PF field to a new level of understanding by participating in important research investigations.

DISCLOSURE: The following authors have nothing to disclose: Kaitlin Fier, Amanda Belkin, Susan Baird, Crowe Brenda, Linda Eres, Marjorie Korn, Leslie Maginn, Mark McCormick, Thomas Vierzba, Frederick Wamboldt, Jeffrey Swigris

No Product/Research Disclosure Information


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