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A web-based registry for patients with sarcoidosis
Alicia K Gerke1, Fan Tang2, Yvette C Cozier3
1Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Iowa, 200 Hawkins Dr., Iowa City, Iowa 52242.
Summary
A novel web-based registry effectively recruits sarcoidosis patients for research. Internet advertising boosts enrollment, but targeted campaigns require focus to match diverse populations.
Area of Science:
- Medical Informatics
- Public Health Research
- Genetics
Background:
- Sarcoidosis is a complex inflammatory disease requiring extensive patient data.
- Establishing large patient cohorts is crucial for understanding sarcoidosis.
- Web-based platforms offer novel recruitment avenues.
Purpose of the Study:
- To develop and assess a web-based patient registry for sarcoidosis.
- To evaluate the effectiveness of internet-based advertising on patient recruitment.
- To analyze recruitment strategies for diverse demographic groups.
Main Methods:
- The Worldwide Sarcoidosis Research Study (WISE) registry was established in 2011.
- Thirteen patient-reported surveys collected data on characteristics, diagnosis, and treatment.
- Time series regression analyzed the impact of broad vs. targeted internet advertising.
Main Results:
- Over 1500 participants registered, contributing DNA samples.
- Generalized internet advertising significantly improved sarcoidosis patient recruitment (p<0.001).
- Higher response rates were observed in specific demographics (whites, females, higher income/education).
Conclusions:
- Web-based registries are effective for building sarcoidosis research cohorts with DNA specimens.
- Internet-based recruitment strategies must be tailored to specific target populations.
- Further research in patient-oriented outcomes and web-based methodologies is feasible.
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