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2019 Highlights -- MyLymeData Registry. (Phase 1 April 27, 2017. Sample 3,903)

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posted on 2019-05-01, 05:51 authored by Lorraine JohnsonLorraine Johnson
Since MyLymeData was launched in November 2015, it has grown enormously and now has over 12,000 members enrolled. It is currently among the top 5% of fully consented, opt-in patient 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.

This report highlights our progress since launch and reviews select descriptive data from Phase 1 of the project, which ran from November 2015-2016. It reflects the efforts of the registry team and the vital contributions of patients in making the registry a success.

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.

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    big datapatient registriesmylymedatalymediseasedescriptive statisticspersonalized treatmentpatient centeredPatient centered outcomes researchHealth CareClinical Sciences not elsewhere classified

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