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

Project Aim(s): This project aimed to utilize data from the Irish Register and the national ALS service to generate a framework for care for Irish ALS patients based on their clinical phenotype,  rate of progression and long term prognosis.  The objective was to design, estimate the costs, and measure the benefits of a multifaceted care programme that incorporates the key clinical and prognostic elements of ALS.  

A Programme for ALS Care in Europe (ALSCarE).

Project Aim(s): The aim is to use epidemiologic and clinical datasets to track in detail the patient journey in ALS, and from this to provide a robust staging system, generate cost models and appropriate health economic metrics, and to inform the design of a user-friendly electronic care matrix for optimal ALS management that can be used by non-specialists, and that in turn can be modified for use in other neurodegenerative conditions.

Deciphering ALS Heterogeneity: A Precision Medicine Approach to Network-based Biomarker Development.

Project Aim(s):

(i) To continue to characterise the clinical subphenotypes of ALS and to further elucidate the observed clinical and genetic overlap between ALS and neuropsychiatric disorders by detailed study of endophenotypes in first and second degree relatives.

(ii) To identify heterogeneous disease subcohorts based on genomic signatures, including those that overlap between ALS and neuropsychiatric illness.

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