education, advocacy and research for Lyme disease
Do You Have Lyme Disease?

Help find a cure for Lyme disease

What Makes MyLymeData Lyme Disease Research Different?

MyLymeData is research done differently. It is the first national large-scale research study of chronic Lyme disease. This study is different from all other Lyme disease studies because it’s patient-powered BIG DATA Lyme disease research.

Why Does Big Data Matter in Lyme Disease Research?

To Solve Big Problems
You Need Big Data

Lyme Disease Big Data Lyme Research
All the previous treatment trials for Lyme disease were very small—just 64 patients were in the treatment group of the largest National Institute of Health study. Compare that to our patient surveys—which can draw over 9,000 responses. The problem with small trials is they don’t give you much information.
Big data studies provide lots of information so that we can look at whether some groups of patients respond better than others to treatment.

Big Data Looks
At Typical Patients

Lyme Disease Big Data Lyme Research
Traditional studies screen patients using highly restrictive criteria that exclude most typical patients. Because of this, those in the study may not be like those seen every day in clinical practice. And, the results of the study may not apply to typical patients. One study screened over 33,000 patients to enroll just 23!
Big data uses very broad entry criteria. Anyone in the United States who has been diagnosed with Lyme disease can enroll.

Big Data Allows
Longer Term Studies

Lyme Disease Big Data
Traditional treatment studies measure only one treatment intervention for a short period of time. For example, the NIH treatment studies used single antibiotics at a time and the longest duration of treatment was 90 days.
Big data examines treatments used in the real world for durations that clinicians are actually using to see what works.

Patients can’t wait.

The last NIH treatment trial recruited over 15 years ago.
There are no treatment trials in the pipeline.
Patients can’t wait and we don’t have to. Let’s do this together!
Lyme Disease Big Data will analyze data and provide information to the community through publication of white papers and peer reviewed articles. We will also partner with researchers and clinicians who are interested in research that puts patient interests at the center and seek to cure or improve quality of life. Our previous surveys have been published in peer-reviewed articles and used to inform healthcare policy issues affecting the community. Our last published survey has been downloaded over 4,000 times.

The Top Ten Things We are Investigating:
  • What is the natural course or progression of Lyme disease? For example, does Lyme disease become worse over time?
  • Which treatments (prescription or alternative) are the most effective?
  • What factors predict poor outcomes? For example, is delayed diagnosis associated with worse outcomes?
  • What are the harms or risks associated with different treatments?
  • Can Lyme disease be sexually transmitted or passed from mother to unborn child?
  • Are there genetic factors that affect the course of the disease?
  • What is the geographic distribution and prevalence of Lyme disease?
  • Some patients have recovered and are well. What treatment made the difference?
  • What is the cost of illness associated with Lyme disease?
  • What role do co-infections play in the course of the illness?

Sign up to become part of the study. It’s easy.

Take your first survey. The first survey is a little longer than most, but you should be able to complete it within 30 minutes. You can take a break and come back to it if you need to. After the first one, we will send you additional surveys (about quarterly) asking additional questions and tracking your progress. We will let you know what we discover.

And, spread the word! The more people that participate in this study, the more we will learn about Lyme disease and how to treat it. So tell your friends, post this on Facebook, and Twitter away. There’s power in numbers!

We hope you stay in the study for many years.
That’s how we will be able to see how Lyme disease progresses,
how it’s transmitted, and what treatments work.

MyLymeData lets patients lead the way to help find a cure.

Add your Lyme data to MyLymeData today!

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