A web-based registry for patients with sarcoidosis

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.