LymeNet Flash: Why I signed up for MyLymeData & why you should too

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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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Topic: Why I signed up for MyLymeData & why you should too

jblral
LymeNet Contributor
Member # 8836

posted

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 |

Lymetoo
Moderator
Member # 743

posted

Moving to General Support

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

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

jblral
LymeNet Contributor
Member # 8836

posted

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)

Posts: 991 | From California | Registered: Feb 2006 | IP: Logged |

OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399

posted

Thank you for this info.

Posts: 1338 | From Above the Clouds | Registered: Nov 2000 | IP: Logged |

NanceLynn
Member
Member # 47321

posted

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!

Posts: 59 | From US | Registered: Jan 2016 | IP: Logged |

SwissPiggy
Member
Member # 47413

posted

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.

Posts: 27 | From Nor Cal | Registered: Jan 2016 | IP: Logged |

Green_Where_You_Water
Member
Member # 46647

posted

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 |

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