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CARE-MG

COVID-19 Associated Risks and Effects in Myasthenia Gravis (CARE-MG)

 

CARE-MG, a physician-reported registry, is a joint effort of the International MG/COVID-19 Working Group and neurologists from across the globe to capture outcomes of people with MG who have developed COVID-19 infections formally launched on 09 April 2020. Robust international participation and collaboration is critical to our collective success in answering fundamental questions: Do MG patients face special risks? Do baseline therapies impact risk? Together, the two groups along with several independent experts have designed and launched this international registry. Click here to learn about the current CARE-MG Research Policy.

 

We hope to capture outcomes in all types of myasthenia gravis (AChR, MuSK, LRP4, Seronegative) irrespective of current treatment status who have confirmed of suspected COVID-19 infection.

 

Definitions: 

  • Laboratory Confirmed COVID-19 - Positive viral RNA tests or positive serology for SARS-CoV-2 
  • Suspected COVID-19 but not confirmed - Fever with Dry cough, +/- anorexia, myalgias, dyspnea, anosmia/ageusia, potential exposure, Chest imaging suggestive of COVID
  • Myasthenia Gravis: As defined by treating physician based on antibody status and if seronegative (based on standard testing such as repetitive testing, single fiber EMG, response to acetylcholine esterase inhibitors)

 

LATEST NEWS

MGFA CARE-MG Registry Providing COVID-19 Data with MG Patients

Electronic health record derived-impact of COVID-19 on myasthenia gravis

Journal of Neurological Sciences

April 2021

Despite not having data from COVID-19 vaccines in MG currently, multiple studies suggest that the influenza vaccine is safe in MG patients for instance [4,5]. Additionally, both work by triggering immune response regardless of preparation differences, and would be expected to have similar safety in MG patients as in the general population. Considering present data available, patients with MG should be prioritized for SARS-CoV-2 vaccination with additional consideration of best practice standards.

READ MORE HERE

 

MG-Care Research for COVID-19 Impact on MG Patients Receives IRB Exemption

The CARE-MG project has received Independant Review Board (IRB) exemption from Advarra. The IRB has determined that the MG-Care research project is exempt from IRB oversight. Click here to view the notification letter. Please email the Myasthenia Gravis Foundation of America at mgfa@myasthenia.org to request a copy of the examination letter.


We ask you to register any appropriate patient, regardless of severity (including asymptomatic patients detected through screening).  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. Reporting a case to this database should take approximately 10 minutes. Necessary permission to collect these data from university institutional review board (IRB) has been obtained.

 

We would like to acknowledge all those who have participated in developing, guiding and launching CARE-MG.  An initial steering committee (SC) has been assembled which will be revisited to include broader representation in the coming months. CARE-MG Steering Committee: Drs. Carolina Barnett-Tapia (University of Toronto, Canada), Gabriel Cea Universidad de Chile, Chile), Elena Cortés Vicente (Universitat Autonoma de Barcelona, Spain), Gary Cutter (University of Alabama, USA), Maria Farrugia (Queen Elizabeth University Hospital, Scotland), Jeff Guptill (Duke University, USA), Jeannine Heckmann (University of Capetown, South Africa), James Howard Jr (University of North Carolina, USA), Saiju Jacob (University Hospitals Birmingham NHS Foundation Trust, UK), Henry Kaminski (George Washington University, USA), Kevin Li (Duke University, USA), Srikanth Muppidi (Stanford University, USA), Hiro Murai (International University of Health and Welfare, Narita, Japan), Richard Nowak (Yale University, USA), Stephen Reddel (University of Sydney, Australia), Valeria Salutto (Universidad de Buenos Aires, Argentina) , Fu-dong Shi (Tianjin Medical University, China), Kimiaki Utsugisawa (Hanamaki General Hospital, Hanamaki, Japan ), Anneke van der Walt (Monash University, Australia),

Heinz Wiendl (University of Münster, Germany).

 

We are counting on international physician participation and collaboration, and hope to capture the majority of cases of COVID-19 in people with MG.  We will rapidly define the impact of COVID-19 on patients with MG and how factors such as age, comorbidities, and treatments are associated with COVID-19 outcomes.

 

Cases can be reported by physicians two ways:

  1. To report a case directly through the EDC (REDCap) system, https://redcap.duke.edu/redcap/surveys/?s=H4EKCWLFKR
  2. To report a case using the paper case report form (CRF), please download the paper form here and submit to Dr. Srikanth Muppidi via email to: 
    COVID-19MGstudy@duke.edu 

Please reach out to us with any additional questions pertaining to CARE-MG via email to COVID-19MGstudy@duke.edu

 

To see the most recent data for this study, please see below:

 

Survey Summary: results as of 04/30/21

 

 

 

 

Complete response

259

 

     

MG Antibody Status

 

 

 

N

%

AChR

204 79%

MuSK

13 5%

LRP4

1 0%

Seronegative

36 14%

Unknown

7 3%
     

Country at time of COVID-19 Onset

 

 

 

N

%

Argentina 4 2%
Canada 2 2%
Germany 24 9%
Indonesia 3 1%
Iran 31 12%
Israel 1 0%
Italy 3 1%
Japan 1 0%
Portugal 11 4%
South Africa 13 5%
Spain 2 1%
Trinidad and Tobago 1 0%
Turkey 1 0%
Ukraine 1 0%
United Kingdom 59 23%
United States 102 39%
     

Type of COVID-19 Diagnosis

 

 

 

N

%

Laboratory positive 229 88%
Suspected COVID-19 but not confirmed 30 12%
     
     

COVID-19 Outcome

 

 

 

N

%

Not recovered 8 3%
Recovered 94 36%
Recovering/Unknown 115 44%
Death 42 16%

 

 

Please also find links to the following relevant articles:

A World Without MG