Guest post: FAIR data for next generation management of MS

Transforming the population based management of today into an individualized, personalized and precision level management is a major goal in research. I believe, the key to reach this next level is FAIR data.

Every day, young people are diagnosed with MS. People with MS struggle with a lot of insecurities about the future. For example, they were planning to buy a car, but will they be able to use it for a while? Or will they end up in a wheelchair? Which treatment will be most effective for them? Therefore, there is an urgent need for decision support systems to support diagnosis, prognosis and treatment. However, to reach insights on an individual level, a modelling approach combining clinical, biological and imaging measures with individualized information like immunological and genetic profiles is needed. In other words, an enormous amount of data is required.

In my recent paper in the Multiple Sclerosis Journal, a plan to revolutionize MS management into a personalized, individualized and precision level is outlined using a FOUR C- plan (=Collect, Connect, Complete and Construct, figure below).

In order for this plan to succeed, data should be FAIR. 

FAIR is a fairly recent concept that stands for Findable, Accessible, Interoperable and Reusable. Imagine any type of data being ‘Findable, Accessible, Interoperable and Reusable’ by both humans and machines. 

The possibilities to discover new insights multiplies manifold. To truly capture the potential of this “four C-plan”, please reflect on following question: “what would YOU investigate, if you had all the data in the world at your disposal and the analysis tools to optimally mine this data?” The day that data will achieve maximal impact, the answers to all these questions can be investigated.

My dream is that one day, this will be possible. I believe that many new insights are to be discovered using the data that is already there. Community efforts need to be combined and synchronized to overcome the challenges obstructing us to reach these insights. So, let’s DREAM… and TEAM UP. The paper is open access, read it here. For contact details and more information, please visit our website. Looking forward to reading your comments.

by Dr Liesbet Peeters
Project manager ​- ​MS DATACONNECT​