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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.

 

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


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. Srikanth Muppidi (Stanford University, USA), Saiju Jacob (University Hospitals Birmingham NHS Foundation Trust, UK), Jeff Guptill (Duke University, USA), Henry Kaminski (George Washington University, USA), James Howard Jr (University of North Carolina, USA), Gary Cutter (University of Alabama, USA), Heinz Wiendl (University of Münster, Germany), Richard Nowak (Yale University, USA).

 

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 9/18/20

 

 

 

 

Complete response

85

 

     

MG Antibody Status

 

 

 

N

%

AChR

68

80%

MuSK

7

8%

LRP4

0

0%

Seronegative

10

12%

Unknown

1

1%

     

Country at time of COVID-19 Onset

 

 

 

N

%

Canada 1 1%
Iran 19 22%
Isreal 1 1%
Italy 3 4%
Japan 1 1%
Portugal 1 1%
Spain 1 1%
Trinidad and Tobago 1 1%
United Kingdom 31 36%
United States 26 31%
     
     

Type of COVID-19 Diagnosis

 

 

 

N

%

Laboratory positive

70

82%

Suspected COVID-19 but not confirmed

15

18%

     
     

COVID-19 Outcome

 

 

 

N

%

Not Recovered

4

5%

Recovered

19

22%

Recovering/Unknown

40

47%

Death

22

26%

 

 

Please also find links to the following relevant articles:

A World Without MG