Project Aim(s): To perform a systematic analysis of tiRNA – protein complexes in ALS and Epilepsy models as well as samples from patients. 

Amyotrophic Lateral Sclerosis (ALS) is a terminal neuro-degenerative disorder of adults, typically having rapid progression and involving both motor and cognitive function. ALS exhibits considerable heterogeneity of both symptom profile and progression. Nevertheless, median survival is typically under three years from disease onset. ALS is the most common motor neurone disease in adults, with an incidence of 2 to 3 per 100,000 in Europe.

Project Aim(s): Development of optimally informative biomarkers for ALS, and establishment of stakeholder agreement regarding their use. This will be achieved by defining, validating and harmonizing optimal methodologies that can be reliably implemented within a pan-European framework program.

Project Aim(s): To discover new causative and disease-modifying pathways to pave the way for novel therapies.

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.