Precision ALS Team Move Towards Realisation of Big Data Platform    

An upcoming conference as part of the PrecisionALS research programme, will mark a milestone achievement in the new European patient ”Big Data” platform being developed as part of Precision ALS, an ambitious academic, clinical and industry research programme that will provide new insights into our understanding of Motor Neuron Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS). The Precision ALS Data Collection Tool Launch and Workshop will take place on the 11th of April in Radisson Blu Hotel, Dublin Airport where partners from 9 collaborating sites across Europe are expected to join.  The event will allow partners to engage with the administrative dashboard and data collection tool for clinical data capture.  

Precision ALS will provide an innovative and interactive platform for all clinical research in ALS across Europe, that will then harness AI to analyse large amounts of data. As the largest international multimodal dataset aimed at precision medicine for this condition, Precision ALS will address the issues with gathering new data at scale in a timely and cost effective-manner across multiple international sites in order to present that data in real time to clinical scientists.  

Speaking about the event, Director of the Precision ALS research programme and Professor of Neurology at Trinity College Dublin, Professor Orla Hardiman said: “I would like to express my thanks to the team who have been busy – from Sinead Impey who has organised ‘User Early Engagement Meetings’ that are creating a forum for information gathering from clinical TRICALS sites located all around Europe, to Frances Gibbons and the ICT team who have brought the project into the ‘User Acceptance Testing Phase’ ahead of the April timeline.” 


The conference proceedings will be led by Professor Orla Hardiman and during the event she will outline where the project is currently positioned and recap on industry and clinical engagement to date. Precision ALS’s Chief Technical Officer, Anthony Bolger, will demonstrate the database platform and data collection tool for clinical data capture. During the scheduled afternoon workshops, he will be joined by the Clinical Programme Manager, Mark Heverin, who is responsible for managing the team of technical and clinical experts who will engage with clinical users for feedback around the usability of the technology, the dataset and the associated processes.