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» LymeNet Flash » Questions and Discussion » General Support » Why I signed up for MyLymeData & why you should too

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Author Topic: Why I signed up for MyLymeData & why you should too
jblral
LymeNet Contributor
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from LymeDisease.org:

https://www.lymedisease.org/why-i-signed-up-for-mylymedata-and-why-you-should-too/

Posts: 991 | From California | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Moving to General Support

--------------------
--Lymetutu--
Opinions, not medical advice!

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jblral
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If you go to the MyLymeData website, you'll find answers to those questions and lots more besides. When you are on the main page, note that there are links across the top of the page that say "Studies" "FAQs" (frequently asked questions) etc.

Here's the link:

https://www.lymedisease.org/mylymedata/

Here's some of what's listed under FAQs:

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.

(click on the link above to read more)

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OptiMisTick
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Thank you for this info.
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NanceLynn
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I completed this survey ... quite a task for me, but worth it! I hope to see the results, what

conclusions are mined from ALL our data!

Oh yes, I had a question that I emailed to them,

and someone emailed back, a very kind and informative note.

I get such a good vibe from this project!

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SwissPiggy
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I can say they are a reputable organization based out of Nor Cal which is where I'm from. I don't know if I have Lyme yet, so I obviously won't be signing up now but will do so in the near future if I get the DX.
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Green_Where_You_Water
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I signed up and it was quite a task to fill everything out, but definitely worth it if the information goes to good use.

Although I filled it out probably over a month ago and haven't gotten any information or updates since.

Does anyone know how often they will ask for updates? Im still in the early stages of treatment and I have already since changed my meds.

Posts: 66 | From New York | Registered: Sep 2015  |  IP: Logged | Report this post to a Moderator
   

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