Projektbeschreibung
The Multiple Sclerosis International Federation (MSIF) and the Multiple Sclerosis Data Alliance (MSDA) have teamed up to set up a Global Data Sharing Initiative to achieve insights on the effect of COVID-19 in people with MS as fast as possible, with the intent to steer decision-making during the pandemic.

Projektziele

The goal of this initiative is to achieve insights on the effect of COVID-19 in people with MS as soon as possible. Therefore, we propose a plan that:

  • Is compliant with all legal and ethical restrictions of data collection and data sharing. We do this by providing a GDPR compliant platform. Next to this, we are being supported with legal and ethical guidance to clear the protocol.
  • Is as fast as possible. We do this by building on the existing national and international data collection initiatives already underway and by reducing the administrative burden (ethical and legal restrictions) by using anonymous data flows.
  • Is sustainable and also supports the long-term need for robust data. To achieve this, we recommend everyone to use and rely upon existing registries, cohorts and platforms as much as possible.
  • Is user-friendly. To achieve this, we have chosen a central platform (kindly provided by QMENTA) that has extensive beyond state-of-the-art possibilities to allow easy data import, integration and data management. Next to this, we are developing a user-friendly interface to allow a user-friendly fast module information collection