Answering COVID questions

A

If you are in the UK, think about signing up to the MS Registry

https://ukmsregister.org/Research/COVID19CRF

but not to be left out, if you are in North America

Mateen at Massachusetts General Hospital to survey people with MS about how they have been affected by the COVID-19 pandemic. Our survey asks participants about their knowledge of and personal experience with COVID-19, and assesses the impacts of the outbreak on their health and quality of life.


 The survey is available through iConquerMS, our people-powered research network for MS. It is open to all people affected by MS, in the US and worldwide, and is an important way for people with MS to take action during these challenging times.

For Health Care Professionals

Clinical registries to track MS patients with COVID-19: If you are a healthcare provider taking care of MS patients with documented or suspected MS, please consider contributing to one of the MS/COVID-19 research registries that have recently come online. 

Coronavirus and MS Reporting Database

COViMS (COVID-19 Infections in MS & Related Diseases) is a joint effort of the National MS Society and the Consortium of MS Centers to capture information on outcomes of people with MS and other CNS demyelinating diseases (Neuromyelitis Optica, or MOG antibody disease) who have developed COVID-19.  Do they face special risks associated with COVID-19? Do certain disease modifying treatments incur special risks?  Together, the two organizations along with several independent experts have designed and launched this North American MS registry.

​We hope to capture outcomes of COVID-19 in people with CNS demyelinating diseases (MS, Neuromyelitis Optica, or MOG antibody disease) who have confirmed or suspected COVID-19.   Please report only after a minimum of 7 days and sufficient time has passed to observe the disease course through resolution of acute illness or death.

We are counting on robust participation and collaboration. We hope to capture the majority of all North American cases of COVID-19 in people with MS and other CNS demyelinating diseases.  We will rapidly define the impact of COVID-19 on patients with MS and other CNS demyelinating diseases and how factors such as age, comorbidities, and treatments are associated with COVID-19 outcomes.

https://www.covims.org/

And also

MS International Federation and MS Data Alliance have established a global data sharing initiative for COVID-19 in people with MS. You can find a list of many existing platforms for collecting data – both from clinicians and direct from patients at http://www.msif.org/covid19data

About the author

MouseDoctor

5 comments

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  • How does one report back if the resolution is ‘deceased’?

    I gave up on the MS registry before because it was negatively impacting my mental health. Sorry.

  • MS International Federation and MS Data Alliance have established a global data sharing initiative for COVID-19 in people with MS. You can find a list of many existing platforms for collecting data – both from clinicians and direct from patients at http://www.msif.org/covid19data

  • NYC resident
    Rituxan
    EDSS 0

    Sunday morning March 15 early hours dreaming about suffocation. Woke up, something wrong with breathing. Blamed my weekly cigar on the Saturday night, had a Tylenol went back to sleep- forgot about it.

    WFH on Thursday 19th.

    20th Wife not feeling well, slight temperature struggled through workday WFH. Went to bed, woke up feeling fine on Saturday 21st at 15:00.

    21st about 17:00 both girls 8 & 10 suddenly not feeling well. Scared now. One slightly elevated temperature other, almost 100. Tylenol, bed, they went to sleep. Stood guard at their beds, used back of hand to monitor temperature – no fancy thermometer. Bit under the weather next day, all back to normal on the Monday morning.

    No tests.

    • Now the dilema…CoVID asymtomatic or cold or something similar…until the tests arrive we will now know, if we could get in the lab we can make a test in two weeks…frustrating we have the technology, the will but not the way…..too much talk about big consortiums and not enough affirmative action

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