A decade ago, LymeDisease.org introduced MyLymeData, now recognized as the largest patient-driven registry for Lyme disease in the United States.

What is a patient registry? It’s a system that collects information about patients with the same medical condition, in order to figure out the best ways to improve their care.

Why is this significant? Because before MyLymeData, there was little real-world information about the many ways that Lyme disease affects individuals, especially those who stay ill for months or years.

Unlike traditional research models, MyLymeData puts the power of information directly into the hands of patients, enabling them to share their experiences.

It seeks to answer pressing questions like: What are the most debilitating symptoms for Lyme disease patients? Are there treatments that provide effective relief? If so, which treatments have proven the most helpful? Does Lyme disease manifest differently in women compared to men? These are not just abstract scientific queries, they are life-altering concerns for thousands of people. More and more, the research world is paying attention.

Shining a light, pointing the way

Since its debut in 2015, MyLymeData has enrolled over 19,000 participants, collecting millions of data points. This invaluable resource shines a light on such critical issues as diagnostic delays, co-infections, treatment outcomes, and the profound effects of tick-borne diseases on patients’ overall quality of life. Importantly, it can help point researchers into promising directions.

Here are two examples of recent peer-reviewed studies from MyLymeData:

Study shows 90% of persistent Lyme patients excluded from clinical trials

There are sex-based differences in Lyme disease. Why this matters.

As MyLymeData marks its 10-year anniversary, we celebrate its important contribution—not only in gathering critical data, but in elevating patient voices and putting them at the forefront of Lyme disease research. Far more than just a database, this registry gives hope to those suffering from tick-borne illnesses, offering the possibility of better treatments and, ultimately, a cure.

If you’re a U.S. resident diagnosed with Lyme disease, consider joining MyLymeData today to help us achieve the milestone of 20,000 participants. Together, we can make meaningful progress in the fight against Lyme disease.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.