Please consider taking part in the mylymedata project – a large-scale study of chronic Lyme Disease, as it’s been over 15 years since the NIH has funded a treatment trial for chronic Lyme.
The MyLymeData registry allows patients to pool their health information through a secure website. “Big data” projects use advanced technology to gather and analyze huge amounts of patient data, which can assist researchers in studying disease patterns and answering important questions such as Why do some people recover from Lyme disease, while others remain ill?
“Patients have more at stake in the diagnosis and treatment of Lyme disease than anyone else involved in their healthcare,” says Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org. “Analyzing large amounts of data can provide insight into how the disease progresses and how effective certain treatments are.”
Big data projects look at the actual care ordinary patients are prescribed by their treating physicians. “This is real-world research. We need to find out what treatments are the most effective in actual clinical practice and what factors affect treatment response,” says Dr. Raphael Stricker, a Lyme disease specialist in San Francisco.
In addition to analyzing disease patterns, MyLymeData hopes to attract researchers interested in launching clinical trials. Patient privacy is critical. To ensure data is protected and secure, LymeDisease.org has partnered with PatientCrossroads, the leading provider of patient registries for the National Institutes of Health.