This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary. MyLymeData is a project of LymeDisease.org. Over the past decade, MyLymeData has transformed the landscape of Lyme disease research by putting patients at the center.
Click on image to view larger image
Download Your 32 page full color
2025 MyLymeData Chart Book
Capturing information about patients with chronic Lyme disease that was previously unknown.
To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration, and progress. The chartbook transforms the individual experiences of over 19,000 patients into actionable insights. It highlights the extraordinary power of patient-driven research to impact science and promote public policy change.
Since its launch, MyLymeData has:
- Enrolled over 19,000 participants
- Collected tens of millions of data points on symptoms, treatments, and outcomes
- Contributed to multiple National Science Foundation awards, working with artificial intelligence and academic researchers
- Published eight peer-reviewed big-data studies that have been cited over 100 times by other scientific publications and in reports to Congress
Recognition and Collaboration
The importance of MyLymeData was recognized by the National Academies of Science, Engineering, and Medicine in its report on the future direction of Lyme disease research. Most recently, we received a Congressionally Directed Medical Research Program grant to use artificial intelligence and data from the registry to better define and understand persistent neurological Lyme disease.
The MyLymeData 2025 Research Chartbook is a celebration of what we’ve accomplished together—and a springboard for what comes next.
Our work is deeply collaborative. We partner with the Lyme Disease Biobank (a Bay Area Lyme Foundation project), academic researchers from institutions including the University of California, Los Angeles, the University of Washington, Johns Hopkins University, the College of New Jersey, and industry scientists. We’ve also served on panels and advisory boards for the National Academies of Sciences, Engineering, and Medicine; the Tick-Borne Disease Working Group; the International Lyme and Associated Diseases Society; and the Columbia Clinical Trials Research Network.
Download The 2025 MyLymeData Chart Book
We invite you to download and review the chart book.
None of this would be possible without the patients who power this registry. Your willingness to share your experiences has fueled a decade of progress and helped shape the future of Lyme disease research. We are deeply grateful for your trust, your data, and your voice.
If you are a patient who is not enrolled in MyLymeData, please enroll today. If you are a researcher who wants to collaborate with us, please contact me directly.
The MyLymeData Viz Blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.
