MyLymeData Patient Registry Highlights

MyLymeData is a patient-driven registry and research platform that permits patients to quickly and privately pool their data. Enrolling thousands of patients permits researchers to evaluate care as it is provided in real world practice. It can also facilitate research by generating research hypotheses and recruiting patients for trials. Enroll in MyLymeData today to become a part of the solution.

A patient registry built to turn real-world experience into better answers.

MyLymeData is a patient-driven registry and research platform that permits patients to quickly and privately pool their data. Enrolling thousands of patients permits researchers to evaluate care as it is provided in real world practice. It can also facilitate research by generating research hypotheses and recruiting patients for trials. Enroll in MyLymeData today to become a part of the solution.

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MyLymeData Impact

What We’ve Done

Enrolled
Data points
Peer-reviewed studies
Citations
Federal report references
Academic partners
National Science Foundation Awards
CDMRP Award

Patient Findings

What We’ve Found

2.2M people live with chronic Lyme disease, with 500K new Lyme cases reported annually

Traveled 50+ miles for care
Saw more than 7 clinicians before diagnosis
Changed work hours or role
Disabled
Care not covered by insurance
Ill for 10+ years
Fair/poor health
Excluded from clinical trials

(Johnson 2011, Delong 2018, Kugeler 2021, Johnson 2014, Johnson 2022, Johnson 2023, Johnson 2025, Yu 2026)