LOS ANGELES >> The National Science Foundation awarded a three-year, $800,000 grant to explore Lyme disease-related predictive analytic techniques using data collected by the MyLymeData patient registry, which will collaborate with researchers at UCLA and Claremont McKenna College on the project, it was announced today.
Lyme disease, a bacterial infection transmitted by the bite of a tick, can be difficult to diagnose and treat. Many patients remain ill after treatment, while others improve. Precision medicine uses predictive analytic tools and artificial intelligence to identify and target treatment approaches to those patients most likely to respond.
LymeDisease.org, a national patient advocacy organization, launched MyLymeData in 2015. The project has enrolled more than 9,000 patients since then, putting it in the top 5 percent of patient-led registries in the nation, according to its CEO and principal investigator, Lorraine Johnson.
More than one million data points have been collected, related to the nature and severity of symptoms, how long it has taken patients to be diagnosed and what treatments have been most effective, she said.
“Big data research is key to advancements in Lyme disease,” Johnson said. “The largest government-funded study of chronic Lyme patients enrolled just 129 patients. Our goal is not only to gather data to help find a cure, but also to help recruit patients for clinical trials.”
The research effort will be led by Deanna Needell, a professor of mathematics at UCLA, and Blake Hunter, an assistant professor at Claremont McKenna College.
“The NSF grant will allow us to develop cutting-edge mathematical tools,” Needell said. “Validation of these tools requires a large real-world database, and MyLymeData fits the bill perfectly.”
Patient registries play a vital role in the progress of data-driven science.
“MyLymeData is part of an essential shift in research recognizing the importance of precision science, precision diagnostics and precision medicine,” said Dr. Raphael Stricker, a San Francisco internist and co-principal investigator on MyLymeData. “Without advancements in these areas, the research environment in Lyme disease will stagnate.”
MyLymeData is open to patients diagnosed with Lyme disease who reside in the United States, whose progress is tracked over time. Patients at all stages of the illness, as well as those who have recovered, are encouraged to join. Family members of deceased patients can report information on their loved ones’ behalf.
Additional information can be found on the LymeDisease.org website.