Alicia K Gerke1, Fan Tang2, Yvette C Cozier3, Michael T Lash4, James Schappet5, Emily Phillips1, Philip M Polgreen1. 1. Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Iowa, 200 Hawkins Dr., Iowa City, Iowa 52242. 2. University of Iowa Department of Biostatistics: 105 River Street, Iowa City, Iowa 52242. 3. Slone Epidemiology Center at Boston University, 1010 Commonwealth Avenue, Boston, MA 02215. 4. University of Iowa, Department of Computer Science, 318 MacLean Hall, Iowa City, IA 52242. 5. Institute for Clinical and Translational Science, University of Iowa, 200 Hawkins Drive, Iowa City, IA 52242.
Abstract
BACKGROUND/ OBJECTIVE: The objective is to present the development of a novel web-based patient registry for sarcoidosis. We describe recruitment efforts and assess efficacy of internet-based advertising on recruitment. METHODS: "Worldwide Sarcoidosis Research Study (WISE)" started in 2011 under the domain www.sarcoidstudy.org. The registry includes thirteen patient-reported surveys about patient characteristics, diagnosis, and treatment. Effects of two internet-based advertising methods (geographically-broad versus geographically-targeted to high sarcoidosis search areas) on recruitment were analyzed with time series regression. RESULTS: Since 2011, over 1500 participants have registered (82% whites, 9% African Americans, 5% mixed, 4% other), with 23% of participants providing saliva samples for DNA. Median age is 43 years (range 21-80). African Americans were more frequently recruited via support groups, while whites had a higher frequency of finding the registry via internet. Generalized internet-based advertising significantly improved recruitment in all demographic groups (p<0.001). However, a higher response rate to internet-based advertising was seen in whites compared to African Americans(p<0.001), females versus males(p=0.043), higher income categories(p=0.048), and increased education level(p<0.001). Targeting advertising campaigns to geographical areas with high internet-search patterns for sarcoidosis, with different demographics, was not effective in raising registry recruitment above baseline or increasing diversity. CONCLUSIONS: A web-based registry is an effective method for establishing a cohort of patients with sarcoidosis invested in clinical research with DNA specimens. Despite limitations, opportunities for research in patient-oriented outcomes and broad internet-based research methodology are possible. Our results demonstrate that web-based approaches to recruit study subjects need to be focused to match different target populations.
BACKGROUND/ OBJECTIVE: The objective is to present the development of a novel web-based patient registry for sarcoidosis. We describe recruitment efforts and assess efficacy of internet-based advertising on recruitment. METHODS: "Worldwide Sarcoidosis Research Study (WISE)" started in 2011 under the domain www.sarcoidstudy.org. The registry includes thirteen patient-reported surveys about patient characteristics, diagnosis, and treatment. Effects of two internet-based advertising methods (geographically-broad versus geographically-targeted to high sarcoidosis search areas) on recruitment were analyzed with time series regression. RESULTS: Since 2011, over 1500 participants have registered (82% whites, 9% African Americans, 5% mixed, 4% other), with 23% of participants providing saliva samples for DNA. Median age is 43 years (range 21-80). African Americans were more frequently recruited via support groups, while whites had a higher frequency of finding the registry via internet. Generalized internet-based advertising significantly improved recruitment in all demographic groups (p<0.001). However, a higher response rate to internet-based advertising was seen in whites compared to African Americans(p<0.001), females versus males(p=0.043), higher income categories(p=0.048), and increased education level(p<0.001). Targeting advertising campaigns to geographical areas with high internet-search patterns for sarcoidosis, with different demographics, was not effective in raising registry recruitment above baseline or increasing diversity. CONCLUSIONS: A web-based registry is an effective method for establishing a cohort of patients with sarcoidosis invested in clinical research with DNA specimens. Despite limitations, opportunities for research in patient-oriented outcomes and broad internet-based research methodology are possible. Our results demonstrate that web-based approaches to recruit study subjects need to be focused to match different target populations.
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