Dublin, 10 August 2023: Precision ALS (PALS), an ambitious academic, clinical and industry research programme that will provide new insights into our understanding of Amyotrophic Lateral Sclerosis (ALS) otherwise known as Motor Neuron Disease (MND), recently held a well attended event in Barcelona last month to discuss the programme and the extant data repository. The event, co-located with the European Network to Cure ALS (ENCALS), drew attendees from across the world marking a major milestone for the research programme and reflecting the importance of the vital research being undertaken by the team.
The main focus of the program was to keep the sites engaged while ensuring that the expectations of existing industry partners are being met. Engaging with new partners to scope out their requirements or commence enrolment, as well as attracting new clinical sites to grow the existing network, was also a priority for the team. Further topics addressed during the workshop was an update on the programme’s progress so far and integration of monitoring and measuring devices to the platform (led by Dara Meldrum and supported by Deirdre Murray in Work Package 4), which needs population with industry partners.
Day one of this event saw several engaging presentations from Work Package leaders providing in-depth insight into the research program. After an open discussion around the work packages, the floor was opened to highlight focus areas from industry partners. In particular, Miriam Galvin left a strong impression as Health Economics received significant emphasis, including discussions relating to biomarkers to predict disease progression; proteomic/novel/digital/self assessment endpoints; consistent ALS-FRS-R diagnostic scales; and reducing burden and drop-outs from trials, which ultimately results in easier and faster means of getting patients on trials for potential treatment.
Day two focussed on the workshop ‘Introducing New Data Collectors’ to bring sites the new evaluation version of the app. Any technical queries or change requests to the patient questionnaire on the data collection tool were gathered and the team are now working towards the Go-live for the 4th of September 2023. The data collection application tool, launched in April 2023, is also now officially live with the Beaumont site.
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/
Image: Prof Orla Hardiman moderates first discussion of the day providing an insight into the structure of the research programme.
Image: Prof. Leonard van den Berg, chair of TRICALS, provides an overview of Precision ALS.
Image: PALS team kick off the day two workshop introducing data collectors to bring sites the new evaluation version of their app. (L-R) Sinead Impey, Daniel Farrell, Matthew Nicholson.