Dublin, 1st March 2022: An ambitious academic, clinical and industry research programme that will provide new insights in our understanding of Motor Neuron Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS), was launched today by Tánaiste and Minister for Enterprise, Trade and Employment, Leo Varadkar TD. The research is supported by the Irish Government through a Science Foundation Ireland investment of €5 million which will be leveraged with an additional €5 million from industry partners.

Precision ALS, which is led by two SFI Research Centres - ADAPT and FutureNeuro - involves world class Irish-based researchers in clinical science, data science and artificial intelligence (AI). The researchers will work in partnership with TRICALS, an independent consortium of leading ALS experts, patients and patient advocacy groups across Europe.

Speaking at the launch, Tánaiste and Minister for Enterprise, Trade and Employment, Leo Varadkar TD said: “This project straddles clinical research and industry, and will combine the best of our technologies, the best of our ideas, and the best of our medical expertise with to potential to change lives for the better. It will develop tools that facilitate clinical trials based on precision-medicine, and has the potential to produce benefits for other rare conditions and diseases, supporting job creation and reducing drug costs.”

The programme, which will advance data-driven prediction models for progression of the disease in patients and next-generation data analysis that facilitates clinical insights and treatment, will include the participation of national and international industry partners, charities and patient organisations.

Simon Harris TD Minister for Further and Higher Education, Research, Innovation and Science welcomed the announcement, saying: “The Covid-19 pandemic has taught us the value of research and the difference it can make to people’s lives. This is a perfect example of the impact research and innovation can have. By supporting and harnessing these types of advanced research projects we will ultimately see the benefits across society.”

Speaking at the launch, Professor Philip Nolan, Director General of SFI said: “The SFI Research Centres were developed to create critical mass of excellent research in areas of national importance, and to ensure this research has tangible benefits for our health, our society and our economy through collaboration between academia, Government and industry across the island of Ireland and internationally. I am delighted to welcome the launch of Precision ALS, which will deliver outstanding science in the area of personalised and precision medicine, focused on neurodegenerative disease. This collaboration will directly benefit healthcare and patient communities, and yield new knowledge, approaches and treatments with the potential to improve the lives of many.”

Precision ALS will provide an innovative and interactive platform for all clinical research in ALS across Europe, that will then harness AI to analyse large amounts of data. As the largest international multimodal dataset aimed at precision medicine for this condition, Precision ALS will address the issues with gathering new data at scale in a timely and cost effective-manner across multiple international sites in order to present that data in real time to clinical scientists.

Director of the Precision ALS research programme and Professor of Neurology at Trinity College Dublin, Professor Orla Hardiman said: “Despite significant advances in pre-clinical models that help us understand the biology of disease in animals, the success of clinical trials has been disappointing. ALS is a disease that only affects humans, and there is increasing recognition of the need for a Precision Medicine approach towards drug development. We know now that ALS is heterogeneous, meaning that it has different causes and different patterns of progression. Large numbers are required to understand these differences.  Using “big data” analyses, Precision ALS will provide an in-depth understanding of the factors that drive heterogeneity, and in doing so will for the first time allow us to target  new and innovative treatments to specific patient subgroups."

Precision ALS is a unique programme that  brings together Clinicians, Computer Scientists, Information Engineers, Technologists, and Data Scientists. The researchers will work together with leading pharmaceutical, data science, clinical research, medical device organisations and the HSE to generate a sustainable precision medicine-based approach towards new drug development that will have many benefits including better clinical outcomes for patients and reducing the economic cost of these diseases.

On completion, Precision ALS will be a first-in-kind modular transferable pan-European ICT framework for ALS that can be easily adapted to other diseases that face similar precision medicine-related challenges.