Skip to main content

Trinity College Dublin, The University of Dublin

Menu Search


Trinity College Dublin By using this website you consent to the use of cookies in accordance with the Trinity cookie policy. For more information on cookies see our cookie policy.

      
Profile Photo

Professor Orla Hardiman

Professor of Neurology/Head of Academic (Clinical Medicine)
Professor of Neurology/Head of Academic (Trinity Inst. of Neurosciences (TCIN))
      
Profile Photo

Professor Orla Hardiman

Professor of Neurology/Head of Academic (Clinical Medicine)

 

Professor of Neurology/Head of Academic (Trinity Inst. of Neurosciences (TCIN))


  NEUROLOGICAL DISEASE   NEUROLOGY
Project Title
 Deep Phenotyping & Complex Genetics of ALS: A Multidisciplinary Population Based Approach
From
2007
To
2017
Summary
Characterization of epidemiology, genetics and phenotype of ALS/MND in Ireland
Funding Agency
Health Research Board
Programme
CSA
Project Type
Clinician Scientist Award
Project Title
 Living and Dying with Amyotrophic Lateral Sclerosis: A Population based Analysis of Palliative Needs, Services and Outcomes in Non-malignant Terminal Illness
From
2013
To
2016
Summary
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease. 70% of those with ALS die within 1000 days of their first symptom. Up to 50% of patients with ALS develop a degree of cognitive impairment, and 15 % develop a full-blown fronto-temporal dementia. There are currently no effective disease modifying therapies for ALS, and clinical intervention is focused on enhancing the quality of life for patients and relatives by relieving symptoms, providing emotional, psychological and spiritual support as needed, nd supporting the family in bereavement. As is the case for all neurodegenerative diseases, the generation of management protocols for ALS are more complex than for monophasic illnesses. This complexity relates to the multi-dimensionality and interdependence of required service provision. By extension, outcomes measurements must also be recognized as being multidimensional and interdependent. Notwithstanding their complexity, the design and availability of tools to determine and measure outcome in neurodegenerative conditions like ALS are of considerable importance. Such tools can be incorporated into the inception of integrated framework models of palliative care that can be planned, implemented, evaluated and reassessed. Design of such a framework requires detailed clinical information, drawn from a population based source that can then be validated in an incident based cohort monitored prospectively. As new disease modifying therapies become available, there is also an evolving need to identify key clinical milestones representing stages of ALS, to measure differences in resource utilization, and to define methods by which quality of life is measured across disease stages. These data are important for pharmaco-economic analyses of new therapeutics, and accurate analysis of these factors is also essential to the generation and monitoring of evidence based care pathway. This process is feasible in Ireland, as a national Register of ALS was established in 1995, and details of all incident cases (>1400) of ALS in the Republic of Ireland have been collected since then. Over 80% of all cases now attend the National ALS Centre in Beaumont Hospital. Retrospective data mining of the Register can provide important information about changes in incidence prevalence and natural history of the disease, the timing benefits and outcome of interventions including non-invasive ventilation and gastrostomy insertion; the beneficial effect of attending a multidisciplinary clinic, and the effects of cognitive impairment on prognosis and outcome. More detailed analysis from the more extensive clinic-based datasets can enrich the Register-based data to capture interactions with clinical professionals and the provision of equipment, and can incorporate phenotypic data including the presence and severity of cognitive impairment. These data can generate and validate prognostic indicators in ALS, from which a previously published staging algorithm can be replicated and validated. Prospective cohort analysis can then best used to generate and validate a framework of multidisciplinary intervention, including the appropriate intervention of general and specialist palliative care services The completed project will provide a best practice framework for future management of neurodegenerative disease, including an embedded rating scale that will trigger specialist palliative intervention in accordance with recent Irish health policy. The multidisciplinary research consortium comprises 6 key researchers from different fields, each with an established track record in their field of expertise, which include clinical care, population health , health services research and health economics. The research programme will be organised in three specific and interlinked work packages, spanning clinical, epidemiological and health services research including health economics.
Funding Agency
Health Research Board
Programme
Interdisciplinary Capacity Building Award
Project Title
 Test project
From
To
Summary

Language Skill Reading Skill Writing Skill Speaking
English Fluent Fluent Fluent
Irish Fluent Fluent Fluent
Spanish Medium Medium Medium
Details Date From Date To
Member Royal Irish Academy 2015 present
Fellow, Trinity College Dublin 2015 present
Fellow of the Royal College of Physicians in Ireland 2001
Fellow of the American Academy of Neurology
Fellow of the American Neurological Association 2014
Marjorie Metzger, Stefan Dukic, Roisin McMackin, Eileen Giglia, Matthew Mitchell, Saroj Bista, Emmet Costello, Colm Peelo, Yasmine Tadjine, Vladyslav Sirenko, Lara McManus, Teresa Buxo, Antonio Fasano, Rangariroyashe Chipika, Marta Pinto-Grau, Christina Schuster, Mark Heverin, Amina Coffey, Michael Broderick, Parameswaran M. Iyer, Kieran Mohr, Brighid Gavin, Niall Pender, Peter Bede, Muthuraman Muthuraman, Orla Hardiman, Bahman Nasseroleslami, Distinct longitudinal changes in EEG measures reflecting functional network disruption in ALS cognitive phenotypes, Brain Topography, 2025, Journal Article, PUBLISHED  DOI
Yang, M. and You, D. and Liu, G. and Lu, Y. and Yang, G. and O†Brien, T. and Henshall, D.C. and Hardiman, O. and Cai, L. and Liu, M. and Shen, S., Polyethyleneimine facilitates the growth and electrophysiological characterization of iPSC-derived motor neurons, Scientific Reports, 14, (1), 2024, Notes: [cited By 0], Journal Article, PUBLISHED  DOI
Erwan Moreau, Orla Hardiman , Mark Heverin, Declan O'Sullivan, Mining impactful discoveries from the biomedical literature, BMC Bioinformatics, (25), 2024, p1 - 20, Journal Article, PUBLISHED  DOI
Saez-Atienzar, S. and Souza, C.D.S. and Chia, R. and Beal, S.N. and Lorenzini, I. and Huang, R. and Levy, J. and Burciu, C. and Ding, J. and Gibbs, J.R. and Jones, A. and Dewan, R. and Pensato, V. and Peverelli, S. and Corrado, L. and van Vugt, J.J.F.A. and van Rheenen, W. and Tunca, C. and Bayraktar, E. and Xia, M. and Baloh, R.H. and Bowser, R. and Brady, C.B. and Brice, A. and Broach, J. and Camu, W. and Chio, A. and Cooper-Knock, J. and Cusi, D. and Drepper, C. and Drory, V.E. and Dunckley, T.L. and Feldman, E. and Floeter, M.K. and Fratta, P. and Gerhard, G. and Gibson, S.B. and Glass, J.D. and Goutman, S.A. and Hardy, J. and Harms, M.B. and Heiman-Patterson, T.D. and Jansson, L. and Kirby, J. and Laaksovirta, H. and Landers, J.E. and Landi, F. and Le Ber, I. and Lumbroso, S. and Guissart, C. and MacGowan, D.J. and Maragakis, N.J. and Mora, G. and Mouzat, K. and Myllykangas, L. and Orrell, R.W. and Ostrow, L.W. and Pickering-Brown, S. and Pioro, E.P. and Pulst, S.M. and Ravits, J.M. and Renton, A.E. and Robberecht, W. and Rogaeva, E. and Rothstein, J.D. and Salvi, E. and Scholz, S.W. and Sendtner, M. and Shaw, P.J. and Sidle, K.C. and Simmons, Z. and Stone, D.J. and Tienari, P.J. and Traynor, B.J. and Trojanowski, J.Q. and Troncoso, J.C. and Valori, M. and Van Damme, P. and Van Deerlin, V.M. and Van Den Bosch, L. and Zinman, L. and Angelocola, S.M. and Ausiello, F.P. and Barberis, M. and Bartolomei, I. and Battistini, S. and Bersano, E. and Bisogni, G. and Borghero, G. and Brunetti, M. and Cabona, C. and Calvo, A. and Canale, F. and Canosa, A. and Cantisani, T.A. and Capasso, M. and Caponnetto, C. and Cardinali, P. and Carrera, P. and Casale, F. and Colletti, T. and Conforti, F.L. and Conte, A. and Conti, E. and Corbo, M. and Cuccu, S. and Bella, E.D. and D'Errico, E. and DeMarco, G. and Dubbioso, R. and Ferrarese, C. and Ferraro, P.M. and Filippi, M. and Fini, N. and Floris, G. and Fuda, G. and Gallone, S. and Gianferrari, G. and Giannini, F. and Grassano, M. and Greco, L. and Iazzolino, B. and Introna, A. and La Bella, V. and Lattante, S. and Lauria, G. and Liguori, R. and Logroscino, G. and Logullo, F.O. and Lunetta, C. and Mandich, P. and Mandrioli, J. and Manera, U. and Manganelli, F. and Marangi, G. and Marinou, K. and Marrosu, M.G. and Martinelli, I. and Messina, S. and Moglia, C. and Monsurrò, M.R. and Mosca, L. and Murru, M.R. and Origone, P. and Passaniti, C. and Petrelli, C. and Petrucci, A. and Pirisi, A. and Pozzi, S. and Pugliatti, M. and Quattrini, A. and Ricci, C. and Riolo, G. and Riva, N. and Russo, M. and Sabatelli, M. and Salamone, P. and Salivetto, M. and Salvi, F. and Santarelli, M. and Sbaiz, L. and Sideri, R. and Simone, I. and Simonini, C. and Spataro, R. and Tanel, R. and Tedeschi, G. and Ticca, A. and Torriello, A. and Tranquilli, S. and Tremolizzo, L. and Trojsi, F. and Vasta, R. and Vacchiano, V. and Vita, G. and Volanti, P. and Zollino, M. and Zucchi, E. and Silani, V. and Fogh, I. and Ticozzi, N. and Ratti, A. and Tiloca, C. and Gellera, C. and Pinter, G.L. and Taroni, F. and Castellotti, B. and Comi, G.P. and Corti, S. and Del Bo, R. and Cereda, C. and Ceroni, M. and Gagliardi, S. and Mazzini, L. and Sorarù, G. and Raggi, F. and Siciliano, G. and Simoncini, C. and Lo Gerfo, A. and Filosto, M. and Inghi, Mechanism-free repurposing of drugs for C9orf72-related ALS/FTD using large-scale genomic data, Cell Genomics, 4, (11), 2024, Notes: [cited By 0], Journal Article, PUBLISHED  DOI
Tappenden, P. and Hardiman, O. and Kwon, S.-H. and Mon-Yee, M. and Galvin, M. and McDermott, C., A Model-Based Economic Evaluation of Hypothetical Treatments for Amyotrophic Lateral Sclerosis in the UK: Implications for Pricing of New and Emerging Health Technologies, PharmacoEconomics, 42, (9), 2024, p1003-1016 , Notes: [cited By 1], Journal Article, PUBLISHED  DOI
Turner, J. and Impey, S. and Gibbons, F. and Bolger, A. and Stephens, G. and Hederman, L. and Hamed, R. and O'Meara, C. and de la Varga, F. and Kommala, J. and Nicholson, M. and Farrell, D. and Galvin, M. and Heverin, M. and Mac Domhnaill, Ã . and McFarlane, R. and Meldrum, D. and Murray, D. and Hardiman, O., Data and Process Harmonisation of MultiNational, Multi-Site Research Data, Studies in Health Technology and Informatics, 316, 2024, p1411-1412 , Notes: [cited By 0], Journal Article, PUBLISHED  DOI
Kleinerova, J. and McKenna, M.C. and Finnegan, M. and Tacheva, A. and Garcia-Gallardo, A. and Mohammed, R. and Tan, E.L. and Christidi, F. and Hardiman, O. and Hutchinson, S. and Bede, P., Clinical, Cortical, Subcortical, and White Matter Features of Right Temporal Variant FTD †, Brain Sciences, 14, (8), 2024, Notes: [cited By 0], Journal Article, PUBLISHED  DOI
Van Damme, P. and Al-Chalabi, A. and Andersen, P.M. and Chiò, A. and Couratier, P. and De Carvalho, M. and Hardiman, O. and Kuźma-Kozakiewicz, M. and Ludolph, A. and McDermott, C.J. and Mora, J.S. and Petri, S. and Probyn, K. and Reviers, E. and Salachas, F. and Silani, V. and Tysnes, O.-B. and van den Berg, L.H. and Villanueva, G. and Weber, M., European Academy of Neurology (EAN) guideline on the management of amyotrophic lateral sclerosis in collaboration with European Reference Network for Neuromuscular Diseases (ERN EURO-NMD), European Journal of Neurology, 31, (6), 2024, Notes: [cited By 14], Journal Article, PUBLISHED  DOI
Kleinerova J, Tahedl M, Tan EL, Delaney S, Hengeveld JC, Doherty MA, McLaughlin RL, Hardiman O, Chang KM, Finegan E, Bede P., Supra- and infra-tentorial degeneration patterns in primary lateral sclerosis: a multimodal longitudinal neuroradiology study., J Neurol., 2024, Notes: [2024 Mar 5. doi: 10.1007/s00415-024-12261-z. Online ahead of print. PMID: 38438819], Journal Article, PUBLISHED
McFarlane, R. and Heverin, M. and Walsh, C. and Hardiman, O., Irish Amyotrophic Lateral Sclerosis Incidence: Age, Period, and Cohort Effects Using a Partial Least Squares Regression Model, Neurology, 102, (11), 2024, Notes: [cited By 0], Journal Article, PUBLISHED  DOI
  

Page 1 of 30
Hutchinson M, Galvin R, Sweeney B, Lynch T, Murphy R, Redmond J, Traynor B.J, Hardiman O, Effect of a multidisciplinary clinic on survival in amyotrophic lateral sclerosis [2] (multiple letters), Journal of Neurology, Neurosurgery and Psychiatry, 75, (8), 2004, p1208 - 1209, Notes: [Cited By :3 Export Date: 16 February 2017], Journal Article, PUBLISHED

  


Award Date
International Alliance of ALS/MND Forbes Norris Award 2011
Sheila Essey Award, American Academy of Neuroloy 2009
American Academy of Neurology Palatucci Advocacy Award
Elected Member, Royal Irish Academy 2015
Epidemiology, genetics and deep phenotyping of Amyotrophic Lateral Sclerosis: Health Services Research; Drug development and Clinical Trials