Precision ALS Extant Data Repository Takes Shape

06 July 2023

Dublin, 6 July 2023: Precision ALS (PALS), 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) has reached another significant milestone.

The historic (Extant) data collected from approx. 22,000 patients across the 9 European TRICALS sites involved in Precision ALS forms the basis for a crucial Operational Repository. Éanna MacDomhnaill and the clinical and ICT teams have been responsible for the data migration and curation of an extensive body of data, which was harmonised and cleaned with collaborating partners. This data will now be interrogated to understand the impact of ageing, environment and genetics on the patients disease trajectory and societal impact.

The data collection application tool, which was launched in April 2023, will now go live with the Beaumont site the week of the 10th July. Communication between Clinical and Technical teams has been powerful with consensus reached on the clinical questionnaire in time for this “Go-Live” event.

Information modelling and process capture is now being achieved at TRICALS sites with ADAPT’s Sinead Impey and Miriam Galvin taking flight for site visits. Jonathan Turner will look to bridge the gap between the new and the old data for further homogenous information modelling.

Upcoming Conference and Workshops:

The next big event on the Precision ALS calendar will take place ahead of the ENCALS Meeting on the 10th of July 2023 in Barcelona. A full day of presentations from work package leaders is planned which will facilitate discussions with industry partners expected to be present on the day.

A series of functional and technical workshops will also kick-off at the end of July starting with an exploration and integration of modalities into the platform with Dara Meldrum and her team followed by understanding stakeholder expectations with Miriam Galvin, Robert Ross, Robert McFarlane, Emmet Costello and their teams whom will all assist Anthony Bolger (Chief Technical Officer, PALS) and the technical team in realising design expectations of the Precision ALS database platform.

Precision ALS partners include the ADAPT Centre, TRICALS, and FutureNEURO. Additional information on the project can be found on their website