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.  

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.

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.

Project Aim(s):

(i) Using existing data, to characterize the impact of ALS stage, cognitive and behavioural effects in ALS on caregiver burden, and to ascertain the unmet psychological and psychosocial needs of caregivers.

(ii) To provide new data focussing on subjective and objective aspects of caregiver burden that can inform psychologically tailored interventions that enable self-management of carer burden.

Project Aim(s): To understand the genetic basis of ALS and to ultimately find a cure for this devastating, fatal neuromuscular disease, Project MinE aims to analyse the DNA of at least 15,000 ALS patients and 7,500 control subjects. The resulting 22,500 DNA profiles will be compared.

Project Aim(s): This project aims to develop and evaluate group-based psychological interventions for caregivers of patients with ALS, where the objective is to reduce anxiety, low mood, and caregiver burden. The overall purpose of this study is to evaluate the effectiveness and efficacy of psychological interventions with this group; to inform best practice regarding the identification and management of caregiver burden in ALS; and to create a formal psychological intervention tailored specifically to the needs and wants of ALS caregivers.

Project Aim(s): This TCD led international network was set up to determine the prevalence of ALS/MND in Latin-America through collaborative work between Prof. Orla Hardiman and researchers in the various countries involved including Cuba, Uruguay and Chile.

Project Aim(s): Our overall aim is to revise existing phenotypic classifications using pathways and network analyses to generate newer more biologically classifications based on causative mechanisms, potential new therapeutic drug targets and indications, treatment response profiles and clinical sub-phenotypes.

Project Aim(s): This proposal aims to combine our novel EEG based technology with detailed neuropsychological assessment to provide a quantitative measure of cognitive change in MS that could be used in a clinical trial setting.  The study will also  provide an opportunity to assess for the first time the impact of Cladribine on cognitive performance using conventional screening tools, detailed neuropsychological batteries, and experimental neurophysiology based paradigms that could be harnessed for future nested case control studies.

Project Aim(s): TUDCA-ALS will focus on amyotrophic lateral sclerosis (ALS) a rare neurodegenerative disorder. TUDCA-ALS is based on the results of a successful proof-of-concept trial and has the ambition to develop a novel therapy in patients with ALS, based on administration of tauroursodeoxycholic acid (TUDCA) in addition to riluzole. TUDCA-ALS aims to perform a state-of-art randomized control trial on safety and efficacy of TUDCA in patients with sporadic ALS, without cognitive involvement and to exploit the project results into a novel therapeutic treatment for ALS.