Learn latest info from MyLymeData at April 7 conference in San Ramon, CA
Whether or not you personally participate in the MyLymeData project, you should be very interested in its results.
With more than 10,000 participants, MyLymeData is now the largest study of chronic Lyme disease patients in history. It has gathered information about people with Lyme disease that has never been collected on this scale before: data about symptoms, length of illness, course of treatment (to name just a few categories).
The goal is to help us better understand such questions as why some patients get well with certain treatments while others remain ill.
It is both an observational study and a research platform. It lets patients pool their individual health data, as well as to collaborate directly with researchers. This is faster, easier, and less costly to conduct than traditional research.
For too long, the Lyme community has been marginalized and ignored by Big Pharma, insurers, government health officials and most doctors.
One result of that situation has been that very few research dollars have been directed towards studying Lyme disease. For instance, the largest government-funded study of chronic Lyme treatment enrolled only 129 patients. That was over 15 years ago—and there are no new studies in the pipeline.
In 2015, LymeDisease.org decided to change things. We built a robust research engine—MyLymeData—and the Lyme community recognized its importance and joined our effort.
And since then, the needle has started to move.
Over the past year, we have partnered with academic researchers from UCLA and Claremont McKenna College, who will use artificial intelligence techniques to explore the two million data points in MyLymeData.
This research team has received a prestigious $800,000 grant from the National Science Foundation for its work analyzing information from MyLymeData.
Other research collaborations are in the works as well.
You can learn the latest results from this project at our second annual MyLymeData patient education conference in San Ramon, CA, on April 7.
LymeDisease.org’s Lorraine Johnson, principal investigator of the MyLymeData project, will tell us what new information has been gleaned from MyLymeData, and where we go from here.
Other speakers include investigative journalist Mary Beth Pfeiffer, author of the new book “Lyme: The First Epidemic of Climate Change” (Read our review of it here); Dr. Raphael Stricker, discussing the future of Lyme diagnostics; and Dr. Christine Green, talking about Lyme-related pain and Herxheimer reactions.