MYASTHENIA

GRAVIS

DATASET

MyRealWorld™ MG is an international observational longitudinal study designed to understand the impact of living with myasthenia gravis (MG). The MyRealWorld MG dataset is available to researchers who would like to further knowledge of MG and improve patient care.

 

About the MyRealWorld MG study

      • Open to all adults who have MG and live in one of the following countries: the US, Japan, Germany, the UK, France, Italy, Spain, Canada, Denmark and Belgium.
      • Data are collected directly from participants via a study app on their smartphones.
      • Participants complete the following: 
              • Personal profile on enrollment: collects data about demographics, MG characteristics, diagnosis, and treatment.
              • Monthly event tracker: treatment changes, side effects, healthcare resource-use, and impact of MG on work/education.  
              • Monthly selection of validated patient-reported outcomes instruments: health-related quality of life, MG symptoms, functioning, and impact of COVID-19.
      • Participants will be followed up for up to two years. 

For more information, contact us here.

Data access

To apply for access to the study data, please complete the data access request form below. All applications will be reviewed by the study’s scientific advisory board before access is granted.  

Once a request is approved, we will provide the data via one of the following routes: 

• Access to the MyRealWorld™ MG study dashboards. The study dashboards contain interactive figures and summary tables, presenting anonymized, aggregated data for key variables, including demographics, MG care, and PROs. Researchers can also export dashboard data in .csv format.  

• If dashboard access is not suitable for the research in question, we will produce a quotation for our data scientists to provide the necessary data. 

Access data

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Request form

Governance

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