Orla Hardiman is a Science (BSc, Human Physiology 1979) and Medical (MB BCh BAO 1983 ) (Doctor of Medicine 1992) graduate of University College Dublin. She undertook a Residency and Fellowship in Neurology at the Harvard Partners Programme Boston (1986-1991), prior to returning to Ireland. She was appointed as a Consultant Neurologist in Beaumont Hospital in 1996. She leads the National ALS Service for Ireland , and takes care of over 80% of all Irish ALS patients. She is the Irish lead for the European Reference Network (ERN) subgroup on Neuromuscular Disorders. Her research group comprises over 50 individuals working in Neurodegeneration, with particular focus on Amyotrophic Lateral Sclerosis (ALS) and frontotemporal dementia. She is author of over 460 peer reviewed publications with over 28,000 citations and her h-index is 81(Scopus). She is a Principal Investigator in the Science Foundation Ireland (SFI) funded FUTURE Neuro and ADAPT Centres, and leads the International SFI funded PRECISION ALS Academic/Industry Consortium (www.precisionals.ie).
She is Co- Chair of the European Network for Cure of ALS (ENCALS) and the European Treatment Initiative to Cure ALS (TRICALS) and is Editor in Chief of the journal Amyotrophic Lateral Sclerosis and the Frontotemporal Degenerations. She leads a clinical trial group for ALS and has participated as Principal Investigator in more than 30 early and late phase clinical trials including 3 new gene therapy trials for ALS. She is the recipient of a number of international awards including the American Academy of Neurology Palatucci Award for Advocacy (2002) , the Sheila Essey Award in ALS Research (2009), and the International ALS Alliance Forbes Norris Award (2011) and the Healey ALS Innovation Award (2020). In Ireland, she received the Tom Connor Distinguished Investigator Award (Irish Soc for Neuroscience 2021), the Trinity College Provost’s Innovation Award (2022), SFI Researcher of the Year Award (2022) and HRB Impact Award (2023). Her research is funded by Science Foundation Ireland, the Health Research Board, The American Centre for Disease Control, The American ALS Association, the British MND Association the Irish MND Association, and the charity Research Motor Neuron.
Amyotrophic Lateral Sclerosis (ALS) is a rare incurable neurodegeneration of complex genetic origin, with peak incidence in late mid-life. Despite significant advances in pre-clinical models that enhance understanding of disease pathobiology, translation of candidate drugs to effective human therapies has been disappointing. Given that ALS is a uniquely human disease, there is increasing recognition of the need for a precision medicine approach towards drug development, as many failures in translation can be attributed to an incomplete understanding of the heterogeneous nature of the condition, both in terms of pathobiology, and in clinical presentation. PRECISION-ALS is an academic industry collaboration in Europe between leading ALS clinicians, university based computer scientists, information technologists, data scientists, and pharmaceutical and data science companies. The objective of PRECISIONALS is to recognise the unique nature of human ALS, and to address the key clinical, computational, data science and technology associated research questions required to generate a sustainable precision medicine based approach towards new drug development. PRECISION-ALS provides a customised and bespoke framework to seamlessly collect, process and analyse research-quality multimodal and multi-sourced clinical, patient and caregiver journey, digitally acquired data through remote monitoring, imaging neuro-electric-signaling, genomic and biomarker datasets , using machine learning and artificial intelligence. PRECISIONALS represents 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.
