Clinical Research

Our clinical research strategy is underpinned by Scotland’s exceptional data resources and excellence in e-health research. We are therefore well positioned to develop powerful longitudinal patient or disease registries that will both improve health provision as well as enable targeted patient research including clinical trials. Some of these are highlighted below:

smartSMART (Scottish Motor Neurone Disease, Audit, Research and Trials)

This is a national register and audit of MND patients in Scotland that will help identify disease patterns and treatment outcomes. It also acts as a platform for access to research and further clinical trials for patients.

Contact: Laura Stephenson

ECAS (Edinburgh Cognitive ALS Screen)

ECAS is a brief, 15–20 minute, assessment of a range of cognitive and behavioural changes, designed specifically for people with MND. It makes cognitive assessment faster and more accessible as it can be used in the clinic or a patient’s home.  Using this tool will help appropriate adjustments to be made in the patient’s care and support.  See our case study in the left sidebar for further information.

Contact: Dr Sharon Abrahams

clinical research discussionsDART (Edinburgh Cognitive Disorders Clinic: Diagnosis Audit Research and Treatment)

The aim of this register is to record clinical information from routine assessment of patients with cognitive disorders such as memory problems.  This will help clinical colleagues to gain a better understanding of the features of cognitive diseases whilst providing access to relevant research trials.

Contact: Denise Cranley

CIP photographyScottish MND DNA Bank

In very rare cases – about 5%, or 1 in 20 – MND is inherited and the condition is present in more than one family member. However, even in cases with no other family member affected, there are likely to be genetic factors which predispose an individual to develop MND, most likely when combined with environmental risk factors. By studying DNA we hope to increase understanding of why and how MND develops and this approach may eventually help in the development of new treatments.

Contact: Laura Stephenson

astrocytes2Skin Cell Biopsies

This is an early-stage study in which researchers invite patients with a degenerative disease such as MND to donate a punch biopsy skin sample. The sample is used by colleagues in the lab to produce stem cells. The stem cells enable researchers to study the differences in brain cell function between the cells from a patient and those from a healthy donor. Click here to read more about this case study (left sidebar).

Contact: Denise Cranley

_DSR4339_200Speak:Unique – The Voicebank Research Project

Speak:Unique – the Voicebank Research Project aims to create personalised synthetic voices for use in communication aids, simply and efficiently. It is a multi-disciplinary effort that combines the expertise of informaticians, speech and language therapists, MND care teams and researchers.

Find out more at www.speakunique.org