If you haven’t done it already, make sure to fill out the follow-up to the MyLymeData Project which 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?
If you’ve never heard of the project and would like to know more, please read: https://madisonarealymesupportgroup.com/2015/11/11/lyme-research-project/
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.
Previous surveys have been published in peer-reviewed publications and used to inform healthcare policymakers on issues affecting the community.
The new follow-up includes a regular 3 month survey that tracks treatments, symptoms, treatment response and quality of life. It also includes a component about genetics, whether Lyme runs in the family, and other related illnesses (e.g. Parkinsons, Lupus etc) that people may have. This survey is a regular quarterly survey to track treatment response and look at what treatments may be working. There will also be a decedent survey that will allow people to enter information on behalf of someone who is deceased–for example, what was the cause of death?
If you want to share information about a Lyme patient who has passed away, there are two ways to do it. If you are enrolled in the program yourself, there is now a place to click to enter information about someone who has died. Otherwise, you can just join in that person’s name, and answer the questions on that person’s behalf. There’s a spot to indicate that you are answering for someone who has died.
To do the follow-up, go to: https://www.mylymedata.org. You will need to type in your user name and password.