MyLymeData is one of the largest patient-driven registries in the nation, with over 15,000 patients enrolled. It was created by patients, is run by patients and will address the issues that Lyme disease patients care about. MyLymeData Viz provides the community with results from MyLymeData. If you are enrolled in MyLymeData, we thank you for providing the data that will accelerate the pace of research in Lyme disease. If you are not enrolled, please enroll today.
In 2015, we launched MyLymeData, our patient registry and research platform. With over 12,000 patients enrolled, today, it is the largest observational study of Lyme disease ever conducted—and actually one of the largest patient driven registries in the nation—for any disease. We have patients enrolled
Misdiagnosis is unfortunately quite common in Lyme disease. Most patients with late or chronic Lyme disease were either misdiagnosed or waited years for their diagnosis—with devastating consequences. We know that early diagnosis in Lyme disease can spell the difference between patients who get well quickly
Using patient-reported outcome data from 3,900 people enrolled in MyLymeData, we looked at how individual patients vary in their response to treatment. Finding out who responds well to which treatments—and then learning more about those people—is an important step towards developing personalized Lyme disease treatment.
We compared the number of Lyme disease cases reported by the CDC with the number of cases enrolled in MyLymeData state-by-state. In states that are not considered by the CDC to be endemic, the number of cases in MyLymeData surpasses those reported by the CDC.
LymeDisease.org’s Quick Byte on neurologic Lyme disease focused on how often Lyme patients are misdiagnosed with a neurologic condition including MS (Multiple sclerosis).
Our initial results presented at the conferences highlight the importance of early diagnosis of Lyme disease to improve patient response to treatment. 23% more patients who were diagnosed early reported being well compared to those diagnosed late.