Journal article
A web-based registry for patients with sarcoidosis
Sarcoidosis, vasculitis, and diffuse lung diseases, Vol.34(1), pp.26-34
2017
DOI: 10.36141/svdld.v34i1.5129
PMCID: PMC6319670
PMID: 30613131
Abstract
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.
"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.
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.
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.
Details
- Title: Subtitle
- A web-based registry for patients with sarcoidosis
- Creators
- Alicia K Gerke - Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Iowa, 200 Hawkins Dr., Iowa City, Iowa 52242Fan Tang - University of Iowa Department of Biostatistics: 105 River Street, Iowa City, Iowa 52242Yvette C Cozier - Slone Epidemiology Center at Boston University, 1010 Commonwealth Avenue, Boston, MA 02215Michael T Lash - University of Iowa, Department of Computer Science, 318 MacLean Hall, Iowa City, IA 52242James Schappet - Institute for Clinical and Translational Science, University of Iowa, 200 Hawkins Drive, Iowa City, IA 52242Emily Phillips - Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Iowa, 200 Hawkins Dr., Iowa City, Iowa 52242Philip M Polgreen - Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Iowa, 200 Hawkins Dr., Iowa City, Iowa 52242
- Resource Type
- Journal article
- Publication Details
- Sarcoidosis, vasculitis, and diffuse lung diseases, Vol.34(1), pp.26-34
- DOI
- 10.36141/svdld.v34i1.5129
- PMID
- 30613131
- PMCID
- PMC6319670
- NLM abbreviation
- Sarcoidosis Vasc Diffuse Lung Dis
- ISSN
- 1124-0490
- eISSN
- 2532-179X
- Grant note
- K23 HL114640 / NHLBI NIH HHS
- Language
- English
- Date published
- 2017
- Academic Unit
- Pulmonary, Critical Care, and Occupational Medicine; Infectious Diseases; Epidemiology; Biostatistics; Injury Prevention Research Center; Business Analytics; Internal Medicine
- Record Identifier
- 9984094746402771
Metrics
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