How information from Lyme disease study can affect the patient care

Information from a major Lyme disease study, which impacts 380,000 Americans yearly, indicate the benefits of early diagnosis but also the failure of physicians to rightly diagnose the disease.

Transmitted by the bite of ticks, specifically infected black-legged ticks, people might not even know they have been bitten, which can delay diagnosis. But preliminary analysis in a survey of almost 4,300 sufferers with results presented at the latest Columbia University/Lyme Disease Association Conference finds a third of sufferers diagnosed early reporting being well; by contrast, just 9% of those whose diagnosis was delayed reported that they felt well.

Even so, most sufferers diagnosed early, 68%, reported that their condition was worse, even with early identification of the sickness.

Information in the research comes from the MyLymeData patient registry that has enrolled more than 6,500 sufferers who input data about their condition and experiences with the illness.

“Patient-powered registries that pool huge amounts of information will be a game changer for misunderstood sicknesses like Lyme disease,” claimed Lorraine Johnson, CEO at Lyme Disease.org. “Big data holds the key to future diagnostics and treatments for sufferers.”

Johnson considers the recently enacted 21st Century Cures Act will give required support to patient-driven observational researches, using real-world evidence to make better care.

With data from thousands of sufferers now in the registry, the Lyme disease study is expanding to detect the course of ailment and responses to treatment. Existing registered sufferers and new patients coming into the program are motivated to complete new survey sections. Further information, involving a list of symptoms, is available here.