Principal Investigators

    Professor Orla Hardiman


    Trinity College Dublin

    Contact information of lead PI



    Title of project or programme

    Living and dying with Amyotrophic Lateral Sclerosis: A Population based Analysis of Palliative Needs, Services and Outcomes in non-malignant terminal illness

    Source of funding information

    Health Research Board

    Total sum awarded (Euro)

    € 625,518

    Start date of award


    Total duration of award in years


    The project/programme is most relevant to:

    Motor Neuron Diseases


    Research Abstract

    Amyotrophic Lateral Sclerosis (ALS)is a progressive neurodegenerative disease. Like the commoner neurodegenerative conditions of Alzheimer Disease, Parkinsons Disease and Frontotemporal dementia, there is no effective treatment. ALS is a good model to study neurodegenerative diseases, as diagnosis is accurate during life, and disease trajectory is rapid. Management of ALS and other neurodegenerations requires a multidimensional palliative approach. Outcome measurements are ideally based on symptom alleviation, quality of life measurements and financial assessments of cost effectiveness. Notwithstanding their complexity, the design of tools to determine and measure outcome is of vital importance. The best way to do this is to map disease progression and service utilization, to determine patients’ and carers’ experience of current services, and to apply this experience to the design of evidence based changes in practice. This is possible in Ireland, as we have a national Register of ALS, and because over 80% of all cases attend the National ALS Centre in Beaumont Hospital. This project will provide a best practice framework for how to manage the later stages of neurodegenerative disease, including a mechanism that will trigger specialist palliative intervention at the most appropriate time and in accordance with recent Irish health policy. The award will be used to build capacity and cross fertilization of skills in a range of areas including community care delivery and health economics amongst clinicians and academics.

    Lay Summary

    Further information available at:

Types: Investments > €500k
Member States: Ireland
Diseases: Motor neurone diseases
Years: 2016
Database Categories: N/A
Database Tags: N/A

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