27 maart 2020
Press Release | ILADS Launches Registry and Crowd-Solving Platform related to #COVID-19 and #Lyme disease; Bron https://www.facebook.com/ilads.lyme/
ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19); Bron https://www.ilads.org/ilads-launches-re ... alth-lyme/
Samenwerking met MyLymeData; Bron https://www.lymedisease.org/mylymedata- ... -research/Chevy Chase, MD – March 26, 2020 – The International Lyme and Associated Diseases Society (ILADS) is launching a new registry and crowd-solving platform, One Health Lyme, which will provide valuable resources to healthcare providers who are treating patients with Lyme and related diseases. In the planning stages for a while, the launch of the One Health Lyme initiative is being pushed forward expeditiously in response to the COVID-19 pandemic.
One Health Lyme will give Lyme healthcare providers a unique opportunity to track and communicate the impact of COVID-19 on this specific group of patients. The unique immunological lesions of these patients will help us gain insights of general importance in the battle against COVID-19.
Similar to initiatives operated by specialty societies that treat autoimmune diseases, this project will collect data from physicians about patient experiences and treatments. The goal is to create a vast repository of information about lyme that physicians and researchers can use to study and treat it and related diseases. “Doctors are in the best position to provide insights into patient experiences and treatment efficacy,” says Dr. Robert Mozayeni, president of ILADS. “Our members are medical professionals who treat these vulnerable patients. One Health Lyme gives them a place to collect and centralize treatment response data.”
One Health Lyme will also be used to provide educational material and support crowd-sourcing solutions—such as aggregating information about the efficacy of a new treatment. “Not only do we hope that it will provide real time educational information, but we also hope it will quickly supply data about what works for various subgroups of patients,” says Mozayeni.
Other Lyme organizations, such as MyLymeData, have been collecting patient-focused information, and ILADS plans to seek a partnership with them, allowing medical professionals to benefit from both initiatives.
The initiative is a collaborative effort with Groopit.co, whose software is designed specifically to collect data in real time from members of an extended team. Allowing loosely connected people to work together efficiently, Groopit helps organizations crowd solve, bring people together, and get quick results.
Now is a particularly important time to be collecting this information. ILADS members are in a unique position to understand how COVID-19 affects their patients. By centralizing and sharing their observations and data, ILADS hopes that the One Health Lyme will not only inform how lyme disease patients are cared for, but it may provide insights into COVID-19 itself. “It may be that what we learn from our patients will help everyone,” notes Mozayeni.