“what would YOU investigate, if you had all the data in the world to your disposal and the analysis tools to optimally mine this data?”
The ultimate goal of MS DATACONNECT is for data to achieve maximal impact. We aim to transform the mostly population based management of Multiple Sclerosis (MS) of today into an individualized, personalized and precision level management. We believe the key to achieve this next level of MS management is “F.A.I.R.” data. F.A.I.R. stand for Findable, Accessible, Interoperable and Re-usable. Currently, data is used rather superficially whereas we assume many new insight are to be discovered using the data that is already there. However, two main hurdles obstruct us from reaching these insights. First, most data is not findable, not accessible, not interoperable and not re-usable. Secondly, we lack proper analytical tools for optimal data mining. With this project, we aim to overcome these two obstructions.
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 should be featured by an individualized and intense clinical follow-up and multidisciplinary treatment. Because of the heterogeneity of the disease, an extensive amount of data is required to reach insights on a personalized level. The possibilities and future perspectives of this project are endless and depend on the stakeholders involved. Few examples are provided here: regulators need data for life-cycle assessment of medicinal products from basic research to the evaluation of their effectiveness and safety in clinical practice, health technology assessment (HTA) bodies want to incorporate data from clinical practice into the drug development process and researchers want to build decision support systems using a multivariable approach combining (para)-clinical data with individualized information like immunological and genetic profiles.
Although many, individually held clinical research databases have been developed over the last few decades, access to them is limited, data is acquired in different ways and differences in definitions and indexing and software platforms preclude direct integration. The existing (inter)national MS registers and IT platforms are either strictly observational or focus on disease epidemiology, access to new disease modifying drugs or quality of life priorities of people with MS.
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.
MS DATACONNECT operates in a very strong national and international interdisciplinary network. This network connects partners involved in MS care, rehabilitation and research with partners involved in IT development, database management, data sharing procedures, statistics, machine learning and prediction modelling. This network is expanding very fast.
To truly capture the potential of this project, please take a moment to reflect on following question: “what would YOU investigate, if you had all the data in the world to your disposal and the analysis tools to optimally mine this data?” Our dream is that one day, this will be possible. This dream can only be achieved when efforts towards this ultimate common goal are combined and synchronized. So let’s DREAM… and TEAM up…
Every accomplishment starts with the decision to try
We are very open for collaboration. Please contact us if you want more information: firstname.lastname@example.org.
“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