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Patient-Driven Data for Science

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5 Ideas
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Have you been involved — as a patient, a researcher, or in another way - in any patient-driven data for research that has involved collaboration between patients and researchers, for Lyme or another disease? For example, this could include research where people volunteer to share their medical data or blood samples. Tell us about your experience by clicking the button ‘Share Here’!

 

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"Stuff That Works"

Stuff that Works is a crowdsourcing platform used to better understand and solve problems for many chronic conditions. Lyme disease is one of the conditions that is in the early stages of research and development on this platform.  https://www.stuffthatworks.health/about  How it works:  People dealing with chronic conditions share their experience in an organized survey. This data is then normalized, anonymized and analyzed using advanced machine learning algorithms...

2 Score
Comments 0

My Lyme Data - Big Data - Lyme Disease Research

MyLymeData is a patient-powered research project. It was conceived by patients, is run by patients, and addresses the issues that patients care about. It lets Lyme disease patients learn from each other and provides data that can help drive Lyme disease research to improve their lives.     IT’S PRIVATE. MyLymeData lets you determine who you want to share information with and what it can be used for. Your data may only be used for research that is patient-centered. You can change...

2 Score
Comments 1

My Lyme Data - Big Data - Lyme Disease Research

MyLymeData is a patient-powered research project. It was conceived by patients, is run by patients, and addresses the issues that patients care about. It lets Lyme disease patients learn from each other and provides data that can help drive Lyme disease research to improve their lives.     IT’S PRIVATE . MyLymeData lets you determine who you want to share information with and what it can be used for. Your data may only be used for research that is patient-centered. You can...

0 Score
Comments 0
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Patient driven Integrative treatment survey for Lyme Disease

Texas Lyme Alliance is conducting a treatment survey to study what is working for Lyme patients to help fill gaps in research.  There are very few clinical trials in Lyme treatments and a handful patient driven surveys reporting on treatments. This survey has formal IRB approval and is in collaboration with 3 medical universities.  It is patient driven research that's got a broad scope covering pharmaceuticals, nutraceuticals, homeopathy, low dose immunotherapy and others.  Please share it...

0 Score
Comments 1
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Definitive Symptoms Of Lyme Disease

I want to know the exact percentage of Lyme sufferers who have thickening in the maxillary sinuses such as I've had since 1968 as shown in the MRI image on the left and also how many have Bell's palsy. These are obviously well known symptoms or Lyme disease; otherwise numerous medical doctors would not have gone to extreme lengths to dismiss such physical diagnostics in favor of applying mental disorder diagnoses even where symptoms are not admitted by patients.  

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