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Multicenter Study
. 2012 Aug;9(5):466-72.
doi: 10.3109/15412555.2012.690010. Epub 2012 Jun 7.

Automated telecommunication to obtain longitudinal follow-up in a multicenter cross-sectional COPD study

Jeffrey I Stewart  1 , Sarah Moyle, Gerard J Criner, Carla Wilson, Ron Tanner, Russell P Bowler, James D Crapo, Robert K Zeldin, Barry J Make, Elizabeth A Regan, For The Copdgene Investigators
Affiliations
Multicenter Study

Automated telecommunication to obtain longitudinal follow-up in a multicenter cross-sectional COPD study

Jeffrey I Stewart et al. COPD. 2012 Aug.

Abstract

Background: It can be challenging to maintain longitudinal follow-up of subjects in clinical studies. COPDGene is a multicenter, observational study designed to identify genetic factors associated with COPD and to characterize COPD-related phenotypes. To obtain follow-up data on patient's vital status and outcomes, the COPDGene Longitudinal Follow-up (LFU) Program was developed to supplement its parent study.

Methods/results: We used a telecommunication system that employed automated telephone contact or web-based questions to obtain longitudinal follow-up data in our subjects. A branching questionnaire asked about exacerbations, new therapies, smoking status, development of co-morbid conditions, and general health status. Study coordinators contacted subjects who did not respond to one of the automated methods. We enrolled 10,383 subjects in the COPDGene study. As of August 29, 2011, 7,959 subjects completed 19,955 surveys. On the first survey, 68.8% of subjects who completed their survey did so by electronic means, while 31.3% required coordinator phone follow-up. On each subsequent survey the number of subjects who completed their survey by electronic means increased, while the number of subjects who required coordinator follow-up decreased. Despite many of the patients in the cohort being chronically ill and elderly, there was broad acceptance of the system with over half the cohort using electronic response methods.

Conclusions: The COPDGene LFU Study demonstrated that telecommunications was an effective way to obtain longitudinal follow-up of subjects in a large multicenter study. Web-based and automated phone contacts are accepted by research subjects and could serve as a model for LFU in future studies.

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Figures

Figure 1
Figure 1
Branching questionnaire with all questions asked to COPDGene study subjects via telephony system, web-survey or manually by clinical coordinators.
Figure 2
Figure 2
Flow diagram highlighting transmission of data from between COPDGene subject, LFU system, clinical center, and data coordinating center.
Figure 3
Figure 3
Percent of COPDGene subjects who responded by website, telephony, and coordinator call at each survey. Over time, patients were most likely to respond by web site.
Figure 4
Figure 4
Percent of subjects responding to survey 1 stratifi ed by education level. There was an increase in response rate among subjects with a higher education level.
Figure 5
Figure 5
Percent of subjects responding to survey 1 stratifi ed by method of follow-up and race. African American's were less likely to respond by web-survey.
See this image and copyright information in PMC

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