Within the MS Data Alliance, we strive to overcome challenges that arise with scaling up real-world MS data. It is important to scale-up, because a lot of data is needed to reach insights on a personalized level. However, finding the data sources of interest can be very hard and time-consuming. Therefore, the Catalogue could be useful in reducing the time needed to discover real-world MS datasets.
The MSDA Catalogue consists of several questionnaires that can be completed by MS registry owners or other initiatives that collect real-world MS data. By completing the questionnaire(s), data custodians share useful information about the collected data without showing the real data. Indeed, in the catalogue, only metadata or descriptive data is listed. The MSDA Catalogue is accessible for everyone who creates an account, which is free of charge.
We envision a patient-centered learning health system in which all stakeholders contribute and use big MS data to co-create the innovations needed to advance the timely treatment and care of people with MS.