How can you join the Global Data Sharing Initiative?
Two webinars are available for data custodians:
- Introduction demo: “How registries can join the Global Data Sharing Initiative?”
- 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:
- Sign an agreement to make sure that the import and the use data is agreed upon between all parties involved.
- Create an anonymous subset of your COVID-19 and MS data at regular intervals to share
- Import the data subset into the QMENTA central platform
Find more detailed information on the ethical, legal and technical aspects of the initiative on the MS Data Alliance website.