Background/Purpose: For precision medicine to address the dynamic nature of autoimmune diseases, more frequent measurements of disease activity and therapy response are needed. We report on the efficiency of a clinical study with samples sourced directly from participants with Systemic Lupus Erythematosus (SLE), a chronic inflammatory autoimmune disease, recruited entirely through online platforms. Such direct-to-patient recruitment has the added benefit of driving down cost and accelerating the speed at which clinical studies can be conducted.

Methods: We obtained IRB approval to allow for recruitment of SLE participants using online methods (Facebook, 4 bloggers with SLE) and a dedicated webpage (theLIFTstudy.com). Eligible study participants had SLE, were ≥ 18 years of age, lived in the United States, and had access to email and internet. Participants agreed to take online health surveys and self-collect three fingerstick blood samples from home that were returned via US mail for genomic analysis.

Results: Within six weeks, 1,042 SLE participants were recruited, after which time active marketing stopped. In total, over 1,400 participants with SLE (97% women, 3% men) enrolled. Participants with lupus were geographically located across all 50 states, with 17% located in rural areas, similar to the national distribution of 19%.^1,2 Age Distribution: 0% ≥18-19, 12% ≥20-29; 23% ≥30-39; 30% ≥40-49; 28% ≥50-64; 4% ≥65; 2% unknown. Ethnicity: 72% White, 11% African American, 8% More than One Race, 6% Hispanic/Latino, 1% Native American, 1% Asian.

Study updates allowed for ongoing engagement. A follow-up email sent a year later, requesting an additional fingerstick blood sample, had a 51% open rate, with 88% of the opens agreeing to provide another sample.

Conclusion: An online direct-to-patient process to recruit for an SLE study is an effective model that can help drive down costs in precision medicine. Through the sole use of online platforms, the LIFT study reached its goal of > 1,000 SLE participants enrolled within 6 weeks. The virality of the study enrolled an additional 400 at no additional marketing cost. Online recruitment enabled nationwide participation, with a rural area rate similar to the national distribution, possibly capturing individuals who may normally lack the access and ability to join a traditional SLE study. Bloggers provided an engaged group of patients from which to recruit. Patient engagement to extend participation was also high and may be indicative of the desire for patients to play a more active role in furthering lupus research.

References:

Medicare Rural Zipcode

US census bureau

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/online-direct-to-patient-recruitment-for-systemic-lupus-erythematosus-results-in-rapid-enrollment/