Data from a major study of Lyme disease, which infects 380,000 Americans annually, demonstrate the benefits of early diagnosis but also the failure of physicians to correctly diagnose the disease.

Transmitted by the bite of ticks, particularly infected black-legged ticks, individuals may not even know they have been bitten, which can delay diagnosis. But preliminary findings in a survey of nearly 4,300 patients with results presented at the recent Columbia University/Lyme Disease Association Conference finds a third of patients diagnosed early reporting being well; by contrast, only 9 percent of those whose diagnosis was delayed reported that they felt well.

Even so, most patients diagnosed early, 68 percent, reported that their condition was poor, even with early identification of the illness.

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Data in the study comes from the MyLymeData patient registry that has enrolled more than 6,500 patients who input information about their condition and experiences with the disease.

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

Johnson believes the recently enacted 21st Century Cures Act will give needed support to patient-driven observational studies, using real-world evidence to improve care.

With data from thousands of patients now in the registry, the Lyme disease study is expanding to track the course of disease and responses to treatment. Existing registered patients and new patients coming into the program are encouraged to complete new survey sections. More information, including a list of symptoms, is available here.

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