MYASTHENIA GRAVIS

Flexible global digital observational study

in rare chronic condition

  Client success story

Vitaccess has collaborated with clinicians and patient representatives to connect a European biotechnology company with a global cohort of myasthenia gravis (MG) patients. Our client is using the data in pharmacoeconomic models and reimbursement submissions.

  Case study by the numbers

Study localized to 9 countries, spanning the US, Canada, Europe, and Japan

participants recruited remotely via the community in ~10 months

years of engaged cohort providing longitudinal data

  Background

  • A European biotechnology company approached us about an observational study in MG, a chronic autoimmune disease causing debilitating muscle weakness.

  • Their treatment was in late-stage development, and they wanted to complement their trial data with reliable real-world evidence.

  Objectives

  • Our client wished to generate data that could prepare the market for launch and support reimbursement submissions.

  • As the global product launch was approaching, they needed a study that could enable rapid recruitment and data collection from a worldwide patient cohort.

  • The design had to be flexible, to meet the varying ethical requirements, approaches to MG management, and cultural practices of different countries.

  Key deliverables

  • Global observational longitudinal study, collecting patient-reported data on the impact of MG across the US, Canada, Europe, and Japan.

  • Digital study app, MyRealWorld™ MG, created in collaboration with scientific experts and patient representatives.

  • Study design and app localized and ethically approved across all countries.

  • 1,500 participants recruited via community and consented electronically in ~10 months, thanks to partnerships with patient advocacy groups.

  • Demographic, MG event-related, and patient-reported outcome data collected regularly, providing longitudinal data accessible via interactive real-time dashboards.

  • Optional participant consent to be contacted about further research opportunities and provision of national healthcare identification details, permitting linkage with other data sources.

  • Participant-centric “Knowledge” section in app, containing advice about MG, study information, and “data nuggets”.

  • Peer-reviewed publications and presentations.

  Client benefit

  • Insights gathered from large international cohort at low time and cost.

  • Dissemination of disease burden data has prepared the market for product launch.

  • Our client is leveraging study data in pharmacoeconomic modelling and reimbursement submissions.

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 patient-reported outcomes. 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

Request form

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