We spoke to Precision ALS Director, Professor Orla Hardiman, about the exciting new Pan-European Programme for ALS
In early March, Tánaiste Leo Varadkar launched the new Pan European ‘Precision Medicine’ research programme for motor neuron disease, also known as amyotrophic lateral sclerosis: (ALS). This programme, known as Precision ALS is supported by the Irish government through a Science Foundation Ireland (SFI) investment of €5 million, and further boosted by another €5 million from industry partners. Precision ALS brings together clinicians, computer scientists, information engineers, technologist and data scientists, and will provide an innovation and interactive platform for all clinical research in ALS across Europe that will then harness AI to analysis large amounts of data. This large, ambitious project places the School of Medicine’s Academic Unit of Neurology to the forefront of clinical research in ALS. The unit already has a research complement of almost 50 individuals, ranging from drug discovery, genomics, biomarker development though to clinical trials, outcome measures and health services research. Professor Orla Hardiman, Director of Precision ALS and Professor of Neurology at Trinity College Dublin, spoke to us about its impact:
“This programme will further support our initiatives in all our research areas at PhD and post-doctoral research level. The programme has also facilitated the appointment of a Professor, two Associate Professors, and an Assistant Professor, and we expect further expansion as the programme develops”.
Precision ALS aligns very well with the thematic strengths of the Academic Unit of Neurology. Focussing on late translational and clinical research, the Unit comprises world leaders in clinical and cognitive phenotyping, neuroimaging, neuroelectric signal analysis and imaging in ALS. Moreover, the unit’s health services and caregiver research is also cutting edge. All of this means that the ALS patient is front and centre of the Precision ALS programme. Professor Hardiman described the continuous drive for better treatments and outcomes:
“We know that ALS is a heterogeneous disease. Our high impact published work has confirmed this. In collaboration with our colleagues in the ADAPT Centre, Precision ALS aims to provide new tools that will help us to understand the biological basis of this heterogeneity. We know that this heterogeneity is one of the reasons that clinical trials to date have been disappointing. Part of this relates to the underlying heterogeneity of biological factors that drive the disease, about which we need a better understanding, and part relates to the limitations in current outcome measures that we use in clinical trials. There is a consensus that these measures are no longer fit for purpose, and there is an urgent need for better objective and data driven measures. Our research group is very well placed to lead the research and to generate the necessary evidence that will address the current limitations of our outcome measures.
Our objective within Precision ALS is to identify and fully characterise patient subcohorts so that we can provide the right drug to the right patient at the right time. We also aim to develop better and more reliable (data driven) outcome measure that are not subject to the variability and bias of existing measures.”
Precision ALS is very much a collaborative effort. The programme is led by two SFI centres, ADAPT and FutureNeuro, and researchers will work in partnership with TRICALS, an independent consortium of ALS experts, patients, and patient advocacy groups across Europe. Speaking about the collaboration, Professor Hardiman said:
“We are privileged to work with colleagues across Europe in this innovative project, and to have established excellent relationships with major pharmaceutical and data science companies.”
