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Defining and Addressing the Complex Needs of ALS Caregivers (ALSA-Cog).

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 MinE.

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.

A Randomised Controlled Study of Psychological Intervention in ALS to Address the Significant and Complex Mental Health Needs of Caregivers (ALSA-RCT).

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.

A Multidisciplinary Study on Cognition in Multiple Sclerosis; An Exploratory Proof of Concept Study using Novel Technology and a nested Longitudinal Study on the Impact of Cladribine Tablets on Cognitive and Behavioural Function in MS.

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.

Safety and Efficacy of Tauroursodeoxycholic Acid (TUDCA) as add-on Treatment in Patients affected by Amyotrophic Lateral Sclerosis (ALS).

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.

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