The Importance of a Patient Registry for Lyme Disease: MyLymeData

To be quite frank, Lyme disease is an under-researched condition. If you look at the data concerning how many clinical trials are developed each year for rare conditions, Lyme disease falls extremely low on the list.

A talk recently given by Lorraine Johnson, JD at the US Department of Health and Human Services’ Lyme Innovation Roundtable, explained patient-centered research as the most surefire way to improve patient lives.

Lyme disease treatment is currently only effective for 35% of patients. This is partly due to the fact that most patients are diagnosed after having already lived with the disease for over 10 years. Unfortunately, for those who are diagnosed late, the cost of treatment is also exponentially more expensive (24,000 dollars each year). Not only do we need not only more effective treatments, we need to get patients diagnosed sooner. This all comes down to needing further research.

Lorraine’s Testimony

Lorraine explains three factors as being the most pivotal for accelerating research for Lyme disease: patient-centered research, big data, and precision medicine.

She believes the problem with our typical approach to research (clinical trials) is that they take too long to complete and are too expensive. Additionally, they usually only apply to a specific group of patients within the diagnosis. NIH funded trials for Lyme disease took around 5 years just to enroll patients, which of course is only the first step in investigation.


MyLymeData is one of the largest patient registries in the nation (for any condition) and it is certainly the largest for Lyme disease. It is now in its tenth year of existence and involves over 12,000 Lyme disease patients. It’s primary goal? To get patients more involved in the research process as a way not only to accelerate the search for a cure, but to give them more of a say in their own healthcare.

“We can and must accelerate the pace of clinical research and include real world patients.”

Before the registry was officially launched, its creators published an Access to Care study in 2011 and a Quality of Life study for Lyme disease patients in 2014. In 2015, MyLymeData was officially created. It now includes patients from every single state in the U.S. and over 2.5 million pieces of data.

Current Research Using the Registry

UCLA researchers received a grant from the National Science Foundation to complete research for Lyme disease using MyLymeData’s registry. Researchers from the University of Washington are also utilizing the data.

MyLymeData has also created a tissue specimen biorepository in collaboration with the National Disease Research Interchange and the Bay Area Lyme Foundation.

Additionally, data from the first study officially using the MyLymeData patient registry was published this year. The studys aim was to develop a more accurate way to measure patients response to treatments. Typically, we use averages, but this means we aren’t accounting for the full array of responses from individual patients.

The rating scale used in this study allowed patients to indicate if they felt better, worse, or unchanged after starting treatment and how much better or how much worse on a 15 point scale. The study surveyed almost 4,000 patients, and instead of seeing averages, evaluators were able to see specific variations between subgroups.

35% of patients reported they improved somewhere between “moderate” and “a very great deal.” With this data, we can analyze what contributed to the success of these patients, as a way to improve care for those who improved less or not at all. Things like time to diagnosis and type of treatment regime may be examined.

This type of research is so important because it is steering us toward more individualized healthcare. It’s also valuable because anyone can ask the patient the question- a patient registry, a healthcare provider, or a researcher. Ultimately, it creates a more comprehensive data set which can easily be exchanged between researchers in the field. This in and of itself can help accelerate research.

The Advantages of Patient Registries

  • Gives researchers a collective set of data with biomarkers, treatment endpoints, patient symptoms, and health records, which can accelerate their ability to do research.
  • Provides patients a space to share the ways their disease affects them in their day to day life. This is something which they may not have the opportunity to share otherwise.
  • Eliminates some of the roadblocks researchers face. It allows them to enter the process after many of the challenges have already been identified and resolved.
  • May be linked with biorepositories
  • Eliminates the risk of wasting money on a trial which would be completely ineffective for patients
  • Can accelerate recruitment for clinical trials (one of MyLymeData’s studies enrolled 3,000 patients in just 3 months)
  • Expedites FDA approval.

Ultimately, patients know more about their individual experience with a disease than anyone else. Through patient registries we can develop a more comprehensive knowledge base for researchers to work from.

If you would like to enroll in MyLymeData you can do so here.

To reach Lorraine Johnson and learn how you can collaborate with MyLymeData to accelerate research, click here.

To read more about MyLymeData and to hear Lorraine’s full speech on its development click here.

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