Precision ALS Extant Data Repository takes shape

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) have reached another milestone. 

Extant Data Study:

The historic (Extant) data collected from approx. 22,000 patients across the 9 European TRICALS sites involved in Precision ALS forms the basis for an 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. These data will now be interrogated to understand; the impact of ageing, environment and genetics on the patients disease trajectory and societal impact.  

Prospective Data Collection: 

The data collection Application tool, which was launched in April 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 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. 

Conference:  

The next big event on the Precision ALS calendar happens ahead of the ENCALS Meeting on the 10th of July 2023 in Barcelona, where a day of presentations from work package leaders should get some great discussion going with Industry partners, expected to be present on the day.  

Workshops: 

A series of Functional and Technical Workshops will kick-off at the end of July starting with 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 and the technical team in realising design expectations of the Precision ALS database platform.