We aim to develop 1° data collection procedures and tools to create data that is F.A.I.R. (=findable, accessible, interoperable and re-usable), 2° IT solutions to allow (temporarily) pooling and linking of F.A.I.R dataset, 3° statistical methods to define minimal requirements for datasets and 4° new analytical methods for optimal mining of connected and pooled F.A.I.R datasets. Two pilot studies are performed. Pilot study 1 develops F.A.I.R. data collection procedures for a local consortium involved in care, rehabilitation and research and connects the datasets involved. Pilot study 2 develops a statistical method to evaluate the relative importance of prognostic risk factors.
For pilot study 1, six partners involved in MS research, care and rehabilitation currently collect data on the same 600-700 MS patients: 1° BIOMED, 2° RMSC, 3° REVAL, 4° MS Liga, 5° UBILIM and 6° PXL-health. This results in a wide variety of variables and a unique multidisciplinary screening.
Following variables are currently collected, see figure 2 for an overview: (figure “overview”):
1° patient specific data (e.g. age, gender, date of birth, ethnic origin, ...);
2° disease specific data (e.g. date of disease onset and diagnosis, type of disease, relapses,…);
3° treatment strategies (e.g. treatment, start and end date of treatment, adverse events, …);
4° paramedical data (e.g. physiotherapy, occupational therapy, speech therapy, psychology, …);
5° clinical data (e.g. MRI quantitative markers, electrophysiology, laboratory results, …);
6° patient reported data (e.g. quality of life, life style, nutrition, …)
7° biological sample specific data (e.g. date of sampling, collection procedure information, …);
8° patient and sample phenotyping (e.g. immunophenotyping, (epi)genetic profiling, …)
Overview of the different multiple sclerosis (MS) characteristics implemented in the multidisciplinary repository named MS DATACONNECT
Different project partners contribute with different data sources: rehabilitation and MS center Overpelt (R&MSC Overpelt, yellow line), the rehabilitation research center and PXL university college (REVAL and PXL), blue line, biomedical research institute (BIOMED, purple line) and university biobank (UBiLim, green line), MS Liga (orange line).
Data collection processes that is automated are represented in blue. Abbreviations used: clinically isolated syndrome (CIS), relapsing remitting MS (RRMS), primary progressive MS (PPMS), secondary progressive MS (SPMS), expanded disability status scale (EDSS), magnetic resonance imaging (MRI), cerebrospinal fluid (CSF)