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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)


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

 

For the most recent data report available from this study, please see below:

 

Survey Summary: results as of 5/15/20

 

 

N

%

Total MG Response Count

26

 

Complete response

16

62%

Incomplete response

10

38%

     

MG Antibody Status

 

 

 

N

%

AChR

11

69%

MuSK

0

0%

LRP4

0

0%

Seronegative

4

25%

Unknown

1

6%

     

Country at time of COVID-19 Onset

 

 

 

N

%

Iran

4

25%

Japan

1

6%

Portugal

1

6%

Spain

1

6%

Trinidad and Tobago

1

6%

United States

8

50%

     

Type of COVID-19 Diagnosis

 

 

 

N

%

Laboratory positive

12

75%

Suspected COVID-19 but not confirmed

4

25%

     

COVID-19 Outcome

 

 

 

N

%

Recovered

3

19%

Recovering

10

63%

Death

3

19%

Unkown

0

0%

 

Please also find links to the following relevant articles:

A World Without MG