Download the data visualisations!
This year marks an important milestone for the MyLymeData patient registry: they are celebrating their 10th anniversary. MyLymeData is a project of LymeDisease.org. Over the past decade, MyLymeData has transformed the world of Lyme disease research by putting patients at the centre.
To mark the anniversary, they are releasing the MyLymeData 2025 Research Chartbook, a visual summary of the groundbreaking research, collaborations and progress made over the past ten years. The collection of charts translates the individual experiences of more than 19,000 patients into actionable insights. It demonstrates the extraordinary power of patient-driven research: its ability to influence science and drive change in public policy.
Since its inception, MyLymeData has:
- has enrolled more than 19,000 participants
- collected tens of millions of data points on symptoms, treatments, and outcomes,
- has participated in several National Science Foundation (NSF) grant-related projects, involving artificial intelligence and academic researchers,
- published eight peer-reviewed big data studies, which have been cited more than 100 times in other scientific publications and conference reports.
The significance of MyLymeData has also been recognised by the National Academies of Science, Engineering, and Medicine in its report on the future directions of Lyme disease research. Most recently, MyLymeData received a Congressionally Directed Medical Research Programme grant to use artificial intelligence and the registry database to more accurately define and better understand chronic neurological Lyme disease.
The MyLymeData 2025 Research Chartbook is both a celebration of what they have achieved together so far and a springboard for what comes next.
Their work is deeply collaborative. Their partners include the Lyme Disease Biobank (a project of the Bay Area Lyme Foundation) and academic researchers from institutions such as the University of California, Los Angeles (UCLA), the University of Washington, Johns Hopkins University, and the College of New Jersey, as well as industry researchers. They have also participated in committees and advisory boards, including 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.
They encourage readers to download and review the collection of figures.
None of this would be possible without the patients who keep this registry alive and running. Their willingness to share their experiences has enabled a decade of progress and helped shape the future of Lyme disease research. MyLymeData is deeply grateful for the trust, data, and voices of patients.
The MyLymeData 2025 Research Chartbook is available in English and can be downloaded here: https://www.lymedisease.org/mylymedata-2025-research-chart-book/?utm_source=chatgpt.com
(C) Lyme Borreliosis Foundation
