Customisation of the Precision ALS Platform for the purposes of Multiple Sclerosis
Project Description: This project involves developing the Precision ALS Platform further to customise it for use with another neurodegenerative condition, Multiple Sclerosis (MS).
Project Objective: The overall objective is to collect and collate clinically relevant data that will enable a system by which all aspects of the MS patient journey through the health system can be collected using a bespoke Patient Data Platform. This Platform will have the capability to incorporate all diagnostics, management and therapeutic interventions on a customised system that is already in operation and continued development for the condition Amyotrophic Lateral Sclerosis (ALS). This project and work package 6 more broadly, of which it is part of, represents a proof-of-concept element of the wider Precision ALS Research Programme. It is taking place only in Ireland as the coordinating Precision ALS site and is aimed at demonstrating that the work in developing the Precision ALS platform has applications beyond that of a single disease type.
Project Status: Phase 1 of this study has been completed. Three large MS centres have been brought on board and ethics approval has been granted at each site to collect the relevant data required to upload to the platform. The necessary data sharing and joint controller agreements have been put in place and the research team, in conjunction with the three hospital consultants, have adapted the ALS data collection fields for use in MS. Phase two of this work has no commenced which involves the collection of pilot data from the MS cohort. These data will be used to inform the refinement of the adapted data collection tool and platform for use with MS from that already developed for ALS. Sustained collection of these data will require additional funding.