ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Voor nieuws, actualiteiten en acties specifiek over Lyme-Borreliose.
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Roxy
Berichten: 5138
Lid geworden op: Wo 29 Okt 2014, 12:14

ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Berichtdoor Roxy » Za 28 Mar 2020, 17:24

ILADS; Bron https://www.ilads.org/
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/
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.
Samenwerking met MyLymeData; Bron https://www.lymedisease.org/mylymedata- ... -research/
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~

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Roxy
Berichten: 5138
Lid geworden op: Wo 29 Okt 2014, 12:14

Re: ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Berichtdoor Roxy » Za 28 Mar 2020, 22:17

Lymedisease.org; Bron https://www.facebook.com/2LymeDisease.org/
"Patients who have had #Lyme disease and co-infections are probably more susceptible because of their altered immune system from the underlying, chronic infection that they’ve had.”
Why Justin Bieber Is Smart To Quarantine After Battling Chronic Lyme Disease - ILADS Doctor Explains; Bron https://hollywoodlife.com/2020/03/24/ju ... interview/
Justin Bieber and his wife Hailey Baldwin are on a self-imposed quarantine in Canada during the coronavirus outbreak and a top expert on Lyme disease explains why they made the right choice.
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~

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Roxy
Berichten: 5138
Lid geworden op: Wo 29 Okt 2014, 12:14

Re: ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Berichtdoor Roxy » Di 31 Mar 2020, 13:30

News LymeDisease.org
30 maart 2020
What five Lyme doctors have to say about COVID-19 and their patients; Bron https://www.lymedisease.org/five-lyme-docs-covid19/
Five well known Lyme doctors put on a webinar where they discuss coronavirus and how it is affecting their patients.

Dr. Sunja Schweig, Dr. Steven Harris, Dr Jacob Leone, Dr Ilene Ruhoy and Dr. Richard Horowitz took part.

They discussed some of the basic science about the virus, whether patients with tick-borne infections are at higher risk of infection, and potential treatments based on the present scientific literature.

Dr. Horowitz also briefly discussed his experience treating three COVID-19 patients and what regimens have been working to date.
Click here to watch the webinar; Bron https://www.dropbox.com/s/1viq1cp05taoi ... 0.mp4?dl=0
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~

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Roxy
Berichten: 5138
Lid geworden op: Wo 29 Okt 2014, 12:14

Re: ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Berichtdoor Roxy » Wo 01 Apr 2020, 00:34

Coronavirus COVID-19 heeft gevolgen voor de patiënten met een Lyme behandeling in Duitsland bij BCA
'Dr C.N MD PhD - I would like to share an update on the BCA-clinic, how we have been affected by the Covid19 coronavirus, our support to patients until life returns to normal, and my ongoing work and passion for helping the Lyme disease community' met een begeleidende brief; Bron https://twitter.com/carstennicolaus

Duitsland Institute Amsterdam (DIA) - Corona in Duitsland; Bron https://duitslandinstituut.nl/artikel/3 ... lde-vragen
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~

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Roxy
Berichten: 5138
Lid geworden op: Wo 29 Okt 2014, 12:14

Re: ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Berichtdoor Roxy » Zo 26 Apr 2020, 19:56

Stichting Tekenbeetziekten - ILADS 'Crowd-Solving Platform'; Bron https://www.facebook.com/Tekenbeetziekten/
De Ilads, de artsen organisatie in de VS die erkent dat de ziekte van Lyme géén eenvoudig te behandelen ziekte is, kondigt aan dat ze een onderzoeksdatabase gaan lanceren voor zorgverleners: One Health Lyme.

Het initiatief wordt nu versneld opgezet door de COVID-19 pandemie. Het platform biedt een unieke kans om de impact van COVID -19 op patiënten met de ziekte van Lyme en andere tekenbeetziekten, die veelal immunologische problemen hebben, te volgen. Hieruit kunnen lessen getrokken worden voor COVID-19 in het algemeen - hetgeen de ILADS weer ten goede komt.

Ilads noemt het een “Crowd-Solving Platform”. Er wordt data verzameld van artsen over behandelingen, patiëntenervaringen en de effectiviteit van behandelingen. Zo kan over nieuwe behandelingen versneld informatie over de werkzaamheid verkregen worden. Ook kan er gekeken worden in welke subgroepen van patiënten behandelingen beter aanslaan.

Het plan is om met MyLymeData, die patiëntenervaringen verzameld, een partnerschap aan te gaan en zo ervaringen over behandelingen in patient-subgroepen te bundelen.

Bij navraag hoorden we dat Europese artsen ook aan de database mee kunnen doen. Mits er voldoende artsen meedoen, zou dat een mooie stap vooruit zijn in het vergelijken van behandelingen ook bij Europese borreliasoorten.
https://www.ilads.org/ilads-launches-re ... alth-lyme/
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~

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Roxy
Berichten: 5138
Lid geworden op: Wo 29 Okt 2014, 12:14

Re: ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme (Lyme - COVID-19)

Berichtdoor Roxy » Vr 22 Mei 2020, 11:57

Stichting Tekenbeetziekten - tijdschrift van Lymedisease.org; Bron https://nl-nl.facebook.com/Tekenbeetziekten/
Leestip! Het tijdschrift van Lymedisease.org met COVID-19 aandacht is gratis leesbaar en voor iedereen beschikbaar.
Lyme in the time of COVID: Latest issue of Lyme Times offers free access for all; Bron https://www.lymedisease.org/latest-issue-summer-2020/ Tijdschrift; Bron https://www.lymedisease.org/members/ass ... r-2020.pdf
In honor of Lyme Disease Awareness Month, the latest issue of the Lyme Times is open access–freely available to all. Articles in the Summer 2020 issue include:
- How Lyme patients can avoid getting sick from the coronavirus
- Lyme experts offer outside-the-box treatments for COVID-19
- Will Lyme disease benefit from COVID-19 research innovation?
- Venturing out? Watch for ticks!
- Tick attachment times–no grace period exists
- When tick-borne diseases look like mental illness
- Latest fireworks from the Tick-Borne Disease Working Group…and more.
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~


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