How will the information on MyLymeData be used?
Last week, LymeDisease.org launched MyLymeData, a major research project aimed at collecting information that can transform the treatment of Lyme disease. Some people have questions about what MyLymeData is and how it will be used.
The following is taken from the Frequently Asked Questions (FAQs) on our website.
The goal of the MyLymeData study is to create knowledge that can benefit patients with Lyme disease.
Many patients with Lyme disease remain ill after antibiotic treatment. We need to understand why some patients respond to treatment and others don’t.
We also need to understand how Lyme disease progresses, how co-infections affect the illness, how the disease is transmitted, and which treatments are the most effective. Our ultimate goal is to improve the quality of life for patients with Lyme disease.
Your data will be used for Lyme disease research that is patient-centered. Patient-centered research is intended to improve quality of life for patients with Lyme disease or to increase our understanding of the disease. Your data will not be sold or leased to others.
New technologies allow patients to pool their data for research. When the data of hundreds or thousands of patients is pooled we can begin to see important patterns about the illness.
Your data, without your name or other identifiers, will be combined with the data of other patients and analyzed to help begin to answer important questions about the course of illness and factors that affect whether patients remain ill or become well.
The LymeDisease.org study team will analyze this data on its own and in partnership with researchers and clinicians who are interested in patient-centered research. Independent researchers working on patient-centered research projects approved by LymeDisease.org. may also analyze de-identified patient data.
LDo will provide information about its findings to the community through blogs, publication of white papers, and peer-reviewed articles.
Our previous surveys have been published in peer-reviewed publications and used to inform healthcare policymakers on issues affecting the community.
The results of our last published survey have been downloaded over 4,000 times. These presentations and publications will never include any information that could identify you.
Click here to read more from our FAQs.
Click here to register for MyLymeData.
I posted my data, but somehow I feel like I did not have the opportunity to be complete. What do I do about that. I am not sure if it was the questions, or that I was not give the opportunity. I have had lots of treatment, did well, but had my treatment jerked. I did extremely well on treatment, but have been getting sicker ever since 2008/2009 when my treatment was jerked.
GMD: I know that that happens to a lot of people. Phyllis did a great talk at AAAS re people who are lucky, people who aren’t and those who die. It’s all important and part of the story. Maybe we should add an open comment text box so that people can say these things too.
We know that this process is new and can be challenging. LDo is here to help. If you have survey questions or technical issues, email us at mylymedata@lymedisease.org and we will respond quickly with one-on-one help.