Contributions
Abstract: EP1773
Type: ePoster
Abstract Category: Therapy - disease modifying - 30 Tools for detecting therapeutic response
Multiple sclerosis should be featured by an individualized and intense clinical follow-up and multidisciplinary treatment. 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 requires extensive longitudinal follow-up. There is an urgent unmet 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. Although many, individually held clinical research databases have been developed over the last few decades, open access to them is limited. Furthermore, the interoperability between these data resources is inexistent, because different types of data is acquired in different ways using different controlled vocabularies, which 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.
The overall aim of this project, “MS DATACONNECT”, is building a multidisciplinary data infrastructure for people with MS that allows extensive longitudinal followup. MS DATACONNECT is an initiative of a consortium of 5 partners involved in MS research, care and rehabilitation. Within this consortium, around 660 people with MS have been investigated. MS DATACONNECT combines following data:1° patient specific data, 2° disease specific data, 3° treatment strategies, 4° paramedical data, 5° clinical data, 6° patient reported data, 7° biological sample specific data, 8° patient and sample phenotyping.
To the best of our knowledge, a data infrastructure that combines as many different types of MS data and parameters is unique. The platform is created in collaboration with Imperial College London, using the OPTIMISE open source software developed for use with MS and integrated with the tranSMART platform. MS DATACONNECT focusses on interoperability with other international registries and is involved in the development of a European Network of National MS Registries.
Disclosure:
LMP: nothing to disclose,
IL: nothing to disclose,
DV: nothing to disclose,
PF: nothing to disclose,
VS: received financial support for research projects from biogen,
AS: nothing to disclose,
VP: nothing to disclose,
NH: nothing to disclose,
PMM receives research support for development of the OPTIMISE platform from Biogen and has received honoraria or educational grants paid to his institution from Biogen, Novartis, Roche and Adelphi Communications,
CT: nothing to disclose,
BVW: nothing to disclose,
NH: nothing to disclose.
Abstract: EP1773
Type: ePoster
Abstract Category: Therapy - disease modifying - 30 Tools for detecting therapeutic response
Multiple sclerosis should be featured by an individualized and intense clinical follow-up and multidisciplinary treatment. 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 requires extensive longitudinal follow-up. There is an urgent unmet 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. Although many, individually held clinical research databases have been developed over the last few decades, open access to them is limited. Furthermore, the interoperability between these data resources is inexistent, because different types of data is acquired in different ways using different controlled vocabularies, which 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.
The overall aim of this project, “MS DATACONNECT”, is building a multidisciplinary data infrastructure for people with MS that allows extensive longitudinal followup. MS DATACONNECT is an initiative of a consortium of 5 partners involved in MS research, care and rehabilitation. Within this consortium, around 660 people with MS have been investigated. MS DATACONNECT combines following data:1° patient specific data, 2° disease specific data, 3° treatment strategies, 4° paramedical data, 5° clinical data, 6° patient reported data, 7° biological sample specific data, 8° patient and sample phenotyping.
To the best of our knowledge, a data infrastructure that combines as many different types of MS data and parameters is unique. The platform is created in collaboration with Imperial College London, using the OPTIMISE open source software developed for use with MS and integrated with the tranSMART platform. MS DATACONNECT focusses on interoperability with other international registries and is involved in the development of a European Network of National MS Registries.
Disclosure:
LMP: nothing to disclose,
IL: nothing to disclose,
DV: nothing to disclose,
PF: nothing to disclose,
VS: received financial support for research projects from biogen,
AS: nothing to disclose,
VP: nothing to disclose,
NH: nothing to disclose,
PMM receives research support for development of the OPTIMISE platform from Biogen and has received honoraria or educational grants paid to his institution from Biogen, Novartis, Roche and Adelphi Communications,
CT: nothing to disclose,
BVW: nothing to disclose,
NH: nothing to disclose.