COVID19 and MS - data custodians

How can you join the Global Data Sharing Initiative?

Two webinars are available for data custodians:

  1. Introduction demo: “How registries can join the Global Data Sharing Initiative?
  2. Technical demo: “How import into QMENTA platform?

Step 1: Data collection

We recommend all data custodians wanting to work on COVID-19 and MS should implement the COVID-19 core dataset within their protocols. This has been developed by a global data taskforce and is based on the International MuSC-19 Case Reporting platform and UK MS Register sub-study protocols.

Step 2: Data sharing

We invite all MS registries and cohorts to join this global data sharing initiative. We can work with both clinician reported and patient reported data on COVID-19 in MS.  To take part you will be invited to:

  1. Sign an agreement to make sure that the import and the use data is agreed upon between all parties involved.
  2. Create an anonymous subset of your COVID-19 and MS data  at regular intervals to share
  3. Import the data subset into the QMENTA central platform

The MS Data Alliance and QMENTA teams will work one on one with each data custodian to support these steps. All participating data custodians will be given access to the central platform.

Download more information on the global data sharing initiative.

Find more detailed information on the ethical, legal and technical aspects of the initiative on the MS Data Alliance website.