MyLymeData Lyme Disease Research
MyLymeData is helping researchers and clinicians better understand how the disease progresses and which treatments may be most effective. Using modern digital tools large-scale data on diagnosis, symptoms, treatments, and outcomes are securely and privately collected.
Participants in the largest ongoing Lyme patient registry
Patients included in a recent MyLymeData study
Or fewer patients in many traditional Lyme disease studies
Patient-powered and focused on patient needs
What is MyLymeData?
A patient-powered research project built around real patient experience.
MyLymeData is a patient-powered Lyme disease research project. It was conceived by patients, is run by patients, and addresses the issues that patients care about. One of the biggest advantages of big data is that it includes very large numbers of patients. MyLymeData is the largest ongoing Lyme patient registry in the nation, and has enrolled tens of thousands!
Add your data to MyLymeData to help find a cure for Lyme disease.
Patient data. Real-world patterns. Better answers.
Patients share diagnosis, symptoms, treatments, and outcomes so researchers can better understand what is happening in real life.
Who Can Enroll?
Help Us Advance Science.
We’re looking for patients in the United States who have been diagnosed with Lyme disease. We welcome participation from people who are currently sick and those who are now well, including both children and adults.
When people are sick, it can feel like they don’t have the energy to help anyone else — this is one meaningful way that any patient can help advance understanding and improve outcomes for the entire Lyme community. Enroll today!
What Makes MyLymeData Different?
Designed for the questions patients care about.
It’s Patient-Powered.
It was conceived by patients, is run by patients, and addresses the issues that patients care about.
It Tracks Real Experiences.
Patients share information about diagnosis, symptoms, treatments, and outcomes over time.
It Helps Drive Research.
It lets Lyme disease patients learn from each other and provides data that can help drive Lyme disease research to improve their lives.
It’s Private.
For this card, replace the icon with the client’s final shhing illustration if they provide it.
Patient Control
Your data should serve patients—period.
MyLymeData requires that patient data be used only for interests that align with the patient community. We vet researchers and restrict data use and re-use so that it is for the benefit of Lyme disease patients.
We also protect patients by providing researchers with access to de-identified data only, by prohibiting re-identification, and by requiring that, like us, researchers limit access to the data, encrypt the data and maintain it securely.
We believe that patients need to be partners in research to ensure that research addresses their interests. Our commitment is to make sure that patient data is used for the benefit of patients—period.
Big Data Can Change Everything
Large samples make it possible to see how different patients respond to treatment.
Consider this: most Lyme disease studies enroll at most 200 patients. Because of these small sample sizes, traditional study findings have been mixed and often required unrealistically big improvements to count as a treatment success.
By comparison, a recent MyLymeData study included nearly 4,000 patients, and showed that some patients improved dramatically while other patients did not. The ability to make this distinction is critical for clinicians to provide care and for patients to become well.
Large samples make it possible to look at subgroups and see how different patients respond to treatment. When an illness is complex or treatment effects are modest, as they may be in Lyme disease, thousands of patients may be needed to get reliable answers. MyLymeData works with researchers to help figure out how to prevent and treat all stages of Lyme disease.
Nearly 4,000 patients in one study
Big data helps researchers see meaningful patterns across diagnosis, symptoms, treatments, and outcomes.
How It Works
Patients share. Data grows. Research becomes more useful.
Patients with Lyme disease tell us about their experience, symptoms, treatments, and results. Periodically, they update their information to let us know what has changed. This allows us to better understand the progression of the disease and what works—and doesn’t work—to help people get better.
01
Enroll
Patients diagnosed with Lyme disease join the registry and begin sharing their experience.
02
Share Data
Participants report diagnosis, symptoms, treatments, outcomes, and changes over time.
03
Find Patterns
Large-scale data helps researchers identify patterns that smaller studies may miss.
04
Improve Care
The goal is better understanding, better treatment decisions, and better outcomes.
MyLymeData Videos
Learn more through featured videos.
Add the four video links from the current MyLymeData videos page here, then include a general link to the Lyme Times YouTube channel.
About MyLymeData
Silver Feldman Discusses MyLymeData
Dr. Raphael Stricker Discusses MyLymeData
Lorraine Johnson Discusses MyLymeData
Every patient can help advance Lyme disease research.
Add your data to MyLymeData to help researchers better understand Lyme disease and improve outcomes for the entire Lyme community.