“It’s amazing how much data is out there.
The question is how do we put it in a form that’s usable”
MS DATACONNECT is a multidisciplinary data infrastructure for people with Multiple Sclerosis (MS), that serves as a proof-of-concept for multidisciplinary data repositories to enhance research, rehabilitation and care of chronic diseases.
Chronic diseases are often featured by an individualized and intense clinical follow-up, treatment and rehabilitation strategy. There is an urgent need for multidisciplinary repositories combining (para)-clinical parameters on different levels together with individualized information like immunological and genetic profiles to investigate multidisciplinary research questions combining multiple parameters. Concrete examples of applications of such a multidisciplinary MS repository are the construction of composite MS diagnostic/prognostic models combining multiple parameters and the development and evaluation of personalized and effective MS treatments and rehabilitation strategies.
The overall aim of MS DATACONNNECT is building an IT platform that can be used as a proof-of-concept to build multidisciplinary data repositories that combine information from specialists, researchers and patients on chronic diseases. The first step towards this goal is constructing a data infrastructure for people with multiple sclerosis (MS). MS is a progressive demyelinating and degenerative disease of the central nervous system with symptoms depending on the disease type and the site of lesions.
MS DATACONNECT is an initiative of a consortium of 5 partners involved in MS research, care and rehabilitation. These partners agreed upon sharing their data, which results in a unique set of information and data types. Following partners are involved: 1) the biomedical research institute (BIOMED) of Hasselt University (UHasselt) , 2) the rehabilitation research center (REVAL) of BIOMED, 3) PXL university College, 4) the rehabilitation and MS center Overpelt (R&MSC Overpelt) and 5) University Biobank Limburg (UBiLim).
Within this consortium, around 660 MS patients have been investigated by 1 or more partners. This results in a wide variety of MS characteristics of the same patients with clinical parameters on different levels in combination with extensive individual phenotyping (=for example immunological and genetic profiling). Access to so many different types of MS data and parameters is, according to our knowledge, unique.
“My colleagues and I, working at Imperial College London, have developed a clinical data entry tool for multiple sclerosis, OPTIMISE. A pilot version of the OPTIMISE is available now. With it, routine assessments can be collected efficiently in the clinic, as is starting to happen through MS centers at Imperial and other UK institutions together with hospitals in Poland. The next step is to integrate paramedical data, brain scans, -omics data, biomarkers from blood samples and patient centred data both from reports through apps and from sensor. The data collection effort from the MS DATACONNECT consortium should provide a perfect template database to help in acceleration of this work.”
Paul Matthews, Data Science Institute, Imperial College Londen
“The unique collaboration between the OPTIMISE and MS DATACONNECT projects will provide a proof-of-concept for multidisciplinary national and international MS registries. They work with an open source IT code. This enables a low priced implementation of an IT platform for MS data entry collection in several hospitals. In addition, it creates the possibility to adapt the IT platform meeting local needs. These characteristics facilitate the formation of national and international MS registries. We are looking forward to collaborate with MS DATACONNNECT for future data pooling and analysis. Comparing data from different countries will be of great benefit to MS patients. The European Network of independent national MS Registries goes beyond national borders.”
Christoph Talheim, Director European Multiple Sclerosis Platform