Lorraine Johnson discusses $800K grant to researchers using MyLymeData
LymeDisease.org’s Lorraine Johnson recently joined Robert Herriman for the second time on Outbreak News This Week Radio Show. They discussed the recent $800,000 grant from The National Science Foundation (NSF) awarded to analytic researchers at UCLA and Claremont McKenna College to explore data collected by the MyLymeData patient registry.
Herriman is co-founder and executive director of The Global Dispatch, and editor-in-chief of Outbreak News Today, two news websites that focus on infectious diseases.
The NSF grant came at an ideal time, just as the MyLymeData registry surpassed 9,000 registrants, yielding over a million data points. This is significant, because prior to MyLymeData, the largest research study of Lyme patients had only 129 people enrolled and took place over 14 years ago.
MyLymeData is a patient registry that takes advantage of new technology that lets patients pool their data in a secure system. This allows researchers to examine a vast collection of data and look at how subgroups of patients respond to different treatment approaches. The ultimate goal is to determine why some patients stay sick and other patients get better.
The project is a true collaboration between researchers and patients—the first of its kind in Lyme disease. It is the first patient-centered research conceived by Lyme disease patients, run by patients and focused on issues that patients care about.
MyLymeData is already the largest study of Lyme disease using real-world data. Our initial goal of 10,000 registrants is well within reach and will make MyLymeData one of the largest patient registries—for any disease—in the nation. To add your Lyme data to MyLymeData today, visit www.MyLymeData.org.
Click here to listen to the interview.
- October 5, 2017 at 12:22 pm
For anyone new in signing up, in case it freezes up on you as you are answering the questions, please send Lorraine Johnson a note on this giving her the specific question it locks up on you.
I am Murphy’s Law, every time I’ve tried to enter information for myself and my late husband it locks up.
Lorraine gave me this information at the recent LYME DISEASE annual conference in Philadelphia. So just sharing that information in case any of you have had problems also.
So happy they were awarded this money for this research congratulations LymeDisease.org !!
We invite you to comment on our Facebook page.
Visit LymeDisease.org Facebook Page