MyLymeData presentation at LDA/Columbia Conference on September 24, 2017 (Philadelphia)
I am very excited to have been invited to give a plenary speech at the LDA/Columbia Lyme Conference this Sunday. I hope to see you there. My presentation abstract is below.
— MyLymeData: The Value of Using Big Data and Subgroup Analysis in Lyme Disease
In 2015, LymeDisease.org launched the first national Lyme disease patient-centered registry and research platform, MyLymeData. The registry has enrolled over 8,000 patients and is in the top 10% of patient registries in the nation.
The registry will be used to answer questions that are important to patients and to track real-world treatment effectiveness and quality of care improvement. It will also be used as a framework for clinical trials.
This presentation will focus on patient-generated data from Phase 1 of MyLymeData and the value of subgroup analysis using big data. This will be illustrated with examples drawing on chronic Lyme disease case definitions, average treatment effect versus subgroup analysis of treatment effect, and the use, effectiveness, and side effects associated with different alternative therapies.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.
I want to give the biggest thank you possible, Lorraine. Who else would collect this data and keep working to get Lyme treated properly? I lose hope like so many Lyme patients, but you have marched on and keep working for action on our behalf. It has been a long 17 years since I was diagnosed with Lyme. I have had Lyme all my life and improper treatment, I think especially with prednisone, when I was so young, which finally let Lyme disease take over. Like so many of us, it took the life I knew away and led to losing my job and insurance too along with so much else. Again, I am so grateful for all you have and are doing.
Is there any form of medication that we can take. I’m sooo lost.
Try Stephen Burners herbs. They helped our family a great deal!
It would be nice if the participants in studies for Lyme disease get invited to the conference. I was in a study Columbia Pres. Hospital with Dr. Fallen and feel we also should at least learn what is new. I don’t hear a word from anyone in the study. There should be a blog for Study participants who did it not only to help others but maybe ourselves. Karen Hulmes
To tell the truth….. I have tried everything and I have never been this close to just giving up. No matter what I have done I just cant shake this illness and regain even a marginal quality of life.
Did you try Hyperthermia therapy ?
Its in Germany St. George Hospital . Hyperthermia kills Lyme bacteria. Im not sure about co infections.
You can call them and ask specifics . if you Google it you can find their site. They have 2 Clinics at Hospital. one for Lyme disease another one for Cancer treatment. I hope you can find info and I hope it can help you.