Since MyLymeData was launched in November 2015, it has enrolled over 12,000 participants and is currently among the top 5% of fully consented, opt-in patient-driven registries in the nation. The registry captures a broad range of data on the health of those living with Lyme disease and uses this information to help advance our understanding of the disease, how it progresses, and the effectiveness of treatment interventions. The ultimate goal of MyLymeData is to improve healthcare for all people with Lyme disease. The MyLymeData 2019 Chart Book highlights results from Phase 1 of the registry, which ran from November 2015 to November 2016. It includes a sample of 3,903 Lyme disease patients. The registry is on-going. Interested patients can enroll at MyLymeData.org.
Funding
Funding for this work is supported in part by grants from the National Science Foundation (NSF BIGDATA DMS #1740325), the Bruce Lindorf Memorial Foundation, and the BMC Foundation. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.