Ongoing efforts

In 2020 the data collection platform will be expanded with a new module to enable self-reported information from people with multiple sclerosis (MS), known as patient-reported outcomes (PRO). The PRO-module is an ongoing project made in collaboration with the Danish Multiple Sclerosis Society that aims to ensure patient participation in the selection of specific scales, surveys and outcomes.

New modules can be implemented in order to expand the list of data-variables if the need to collect specific information arises. For example, a module to collect data on Covid-19 infection has been implemented very fast during April 2020. The core COVID-19 dataset will contribute to a global data sharing initiative and can serve to answer questions on the impact of the Covid-19 pandemic on different aspects of MS.

The possibility to adjust the data collection platform according to emerging research questions is of increasing importance for patients, researchers, health authorities and industrials. It is another step in the direction of personalized patient management.