I am a scientist at the Luxembourg Centre for Systems Biomedicine (LCSB) of the University of Luxembourg and I have been involved in the Luxembourg Parkinson Study (NCER-PD) since its beginning in 2015. With a background in clinical and biomedical informatics, I am taking care of the tremendous amount of data generated in the study, together with my colleagues. With more than 1500 people participating in the study over the course of 5 years, we have collected several millions of data points by now.
Thorough and standardised data management is absolutely essential to allow a proper evaluation of the information collected in the framework of the NCER-PD study. Furthermore, we also integrate the different data coming from surveys, visits at the physician as well as mobile sensor devices and biological samples.
At the LCSB, we are using state-of-the-art software solutions to manage, analyse and store all the data given by the patients according to the latest European regulation on data protection and privacy (GDPR). Generally, we have one fundamental rule: If there is no software solution yet for an existing challenge, we will create one – for the benefit of research and of course the patient!
We can then use the data to look for similarities in patient’s profiles, group them into different clusters of disease severity and compare them to other studies. It can help researchers to identify hallmarks of Parkinson’s disease.
In short, we provide the infrastructure to get the maximum out of the valuable contribution of every participant in the NCER-PD study.