#InspireInclusion within ADAPT: Meet Precision ALS

07 March 2024

Amidst the global celebration of International Women’s Day, ADAPT would like to highlight the remarkable contributions of women within the Precision ALS (PALS) project. P-ALS is led by two SFI Research Centres – the ADAPT Centre and FutureNeuro – and represents an ambitious academic, clinical and industry research programme providing new insights into Motor Neuron Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS).

Launched in 2022, PALS involves world class Irish-based researchers in clinical science, data science and AI. The researchers work in partnership with TRICALS, an independent consortium of leading ALS experts, patients and patient advocacy groups across Europe. National and international industry partners and charities including patient organisations also actively participate. The programme will result in advanced data-driven prediction models for progression of the disease in patients and next-generation data analysis that facilitates clinical insights and treatment.

This week for International Women’s Day, ADAPT takes pride in fostering inclusion by acknowledging the multitude of women who lead and contribute to this significant programme. Leading the P-ALS research programme is Director and Professor of Neurology at Trinity College Dublin, Professor Orla Hardiman. Associate Professors Dara Meldrum and Miriam Galvin are leading the way in remote monitoring devices and socio economic factors to encapsulate the disease, respectively. P-ALS is also fortunate enough to have the constant support in information modelling from Professor Lucy Hederman and Professor Gaye Stephens. Ms. Frances Gibbons, operates as the programmes ICT Project Manager, Vanessa Hens operates as Project Manager of Tricals sites and Dr. Ciara O’Meara is the Executive Manager of the program. 

There are many other members of the team that play critical roles in the program: Dr. Deirdre Murray’s clinical perspective on respiratory function; Ms. Niamh Timon in patient interviews; Dr. Sinead Impey in capturing requirements from sites. A strong team of ladies (Evelyn Fox, Imelda O’Keefe and Julie Connelly) pave the way forward in legal matters to ensure patients have informed consent and data control is to the fore in such a complex program. More recently, they have added Linda Douris to the team, where she will bridge the gap between ALS and Multiple Sclerosis, ensuring we capture additional information around medications and usage in this exemplar disease. The support from the ADAPT Centre and TCD Operational management teams also include some fine female counterparts such as Audrey Crosbie, Alex Irwin, Robin O’Driscoll, Kristina Karpovas, Olivia Waters, Michelle Kelly and many more that we count on daily to ensure we translate research findings to the public and Industry alike.   

Photo: Precision ALS recently held an Amsterdam Masterclass focussing on Real-Word Data Collection and Collaboration. Learn more >

Additional ADAPT members involved on the project are Anthony Bolger (CTO), Matthew Nicholson (Senior Research Engineer), Daniel Farrell (Research Engineer), John Kommala (Software Developer), and Ferran de La Varga (Software Developer).

To learn more about this innovative project, visit their website here: https://www.precisionals.ie/