Precision ALS launch new sites, increasing registers of patient journey data for the programme
The Precision ALS TRICALS Consortium began with nine sites coming together under the direction of Prof. Orla Hardiman with a focused goal to join their population based registers of patient journey data as well as linked genetic profiles. The founding member sites joined forces and pooled retrospective data from their registries. Utilising that knowledge base, Prof. Miriam Galvin and the team began developing processes to understand the differences in the data collected and begin data harmonisation.
To prepare for a site’s Go-live, a site visit first takes place where sites engage at a remote meeting to review the three pillars. In person site engagement takes place so as to understand how data is sourced at each site as well as to understand what the processes will look like. Sites are placed on an evaluation version of the data collection tool and after one to two weeks of testing, meetings are arranged to assess the suitability for Go-Live readiness.
It is vital for the team to ensure that ethics and patient consent are in place when assessing a site. Getting sites onboarded involves numerous stages and processes undertaken by the team. The current status of site engagement is tracked by Dr. Sinead Impey and presented by Frances Gibbons, Precision ALS ICT Project Manager, in Figure 1 below. ADAPT Trinity College Dublin academics, Prof. Gaye Stephens and Prof. Lucy Hederman as well as Trinity Research Fellow, Jonathan Turner, along with the clinical team of Mark Heverin, Éanna Mac Domhnaill, Robert McFarlane, Miriam Galvin and Orla Hardiman, are involved in the harmonisation processes and collate and inform decisions on data for integration and harmonisation from sites.
Figure 1: Site status of the TRICALS Members as of November 2023.
About Precision ALS:
Precision ALS is a €10 million research programme involving researchers at the SFI Research Centres ADAPT and FutureNeuro along with the TRICALS Consortium, Europe’s largest ALS research initiative. Actively participating are national and international industry partners and charities including patient organisations. Further information on this research programme can be access via their website: https://www.precisionals.ie/