Research studies

This page lists the ongoing CARE-MND clinical research studies. If you would like further information on any of these studies, or would like to take part, please contact us.

Name of study

MND Register / CARE-MND platform

Status Recruitment ongoing
What is the aim of the study? The purpose of the MND Register is to (1) record basic information about the diagnosis and care journey of people with MND. This is necessary to improve the quality and timeliness of care provision; and (2) offer people living with MND the opportunity to participate in research, including clinical trials to test potential new drugs.

Who is eligible? Everyone living with MND in Scotland
What is involved? Signing up to the Register. Please register your interest on this website.
More information Download the MND Register: invitation letter & info sheet (v4)

 

Name of study

Regenerative Neurology Tissue Bank

Status Recruitment ongoing
What is the aim of the study? We are building a comprehensive bank of samples (blood, saliva or spinal fluid) from people with neurological conditions. The samples are stored for future research into the causes and mechanisms of these conditions.The samples will be valuable for understanding why these conditions affect certain people and also for the development and evaluation of new diagnostic tests.
Who is eligible? Everyone living with MND in Scotland
What is involved? A one-off, anonymous donation of either saliva or blood
More information Download the Information sheet

 

Name of study

GTAC: Genomic Translation for ALS Care

Status Recruiting now
What is the aim of the study? GTAC is an international observational study that will investigate why a person develops MND and why their symptoms present and progress with a particular pattern. We will gather information about your health, environmental exposures over your lifetime, and follow the pattern/progression of your disease over time. This information will be used together with genetic information from your blood to look for factors that determine why motor neuron degeneration begins and how or why it progresses. The study will also store cells from your blood that can be used in future studies.
Who is eligible? Lothian MND patients and other people with MND willing to travel to Edinburgh to the Anne Rowling Clinic
What is involved? A donation of blood for DNA; a peripheral stem cell donation; repeated interviews with a research nurse every 3 months for up to three years.
More information Download the Information sheet; visit the GTAC page on the ALS Association website
Participant feedback  Download GTAC Participant Feedback Sept 2017 [PDF]

 

Name of study

MND Brain Bank

Status Recruitment ongoing
What is the aim of the study?
The MND Brain Bank is for people who wish to indicate their willingness for a post mortem examination to be carried out following their death. The purpose of this may be to provide a full diagnosis for their family and/or to donate tissue samples and/or organs for research purposes.

Who is eligible? Everyone with MND
What is involved? Donation to research of samples taken from the brain and spinal cord after death
More information Download the Information sheet and visit the Edinburgh Brain and Tissue Bank website

 

Name of study

ProSec3: evaluation of excessive saliva management

Status Recruitment ongoing
What is the aim of the study? This is a UK-wide study led by The University of Sheffield. The study will assess how many people with MND have a secretion problem, how problematic these symptoms are, and the effectiveness of different treatments.
Who is eligible? Everyone living with MND in NHS Tayside, Greater Glasgow and Clyde, or Lothian.
What is involved? MND Clinical Specialists will recruit participants. The study involves completion of questionnaires at routine appointments.
More information Download ProSec3 patient information sheet_v4 12Feb18

 

Name of study

PostGas: evaluation of post-gastrostomy management

Status Recruitment ongoing
What is the aim of the study? This is a UK-wide study led by The University of Sheffield. The study will assess best way to manage diet for people with MND after they have a feeding tube (often called a PEG, RIG, PIG or gastrostomy tube).
Who is eligible? Everyone living with MND in NHS Tayside or Lothian.
What is involved? MND Clinical Specialists will recruit participants. The study involves completion of questionnaires at routine appointments.
More information Download PostGas patient information sheet_v1 24th Nov 2017

 

Name of study

Speak:Unique – The Voicebank Research Project

Status Actively recruiting voice donors with particular accents to the voicebank. Pilot study of voice reconstruction for patients ongoing in Lothian.
What is the aim of the study? The Speak:Unique research project aims to create personalised digital voices for communication aids, simply and efficiently.

Who is eligible? Please check map of accents currently needed for voice donors
What is involved? Recording your voice at the Anne Rowling Clinic Edinburgh. Find out more.
More information Visit the Speak:Unique website

 

Name of study

Clinical Impact of Apathy in Motor Neurone Disease

Status Recruiting now
What is the aim of the study? To investigate how motivation changes in people living with MND and how it associates with cognitive functioning, quality of life and caregiver lifestyle.
Who is eligible? Those aged 25-85, who have been diagnosed with amyotrophic lateral sclerosis (ALS) after the 1st of January 2017 and live in Scotland.
What is involved? A 1-hour interview every 3 months over the course of a year, at home, with the person living with ALS and their carer/relative/friend.
More information Download the Information sheet for person with MND or Information sheet for carer/relative/friend
You can also contact Debbie Gray directly on debbie.gray@ed.ac.uk or 0131 650 4653.

 

Name of study

TONic: Trajectories of Outcome in Neurological Conditions – Quality of Life and neurological disease

Status Fully recruited – no longer accepting new participants
What is the aim of the study? We want to understand how living with MND affects quality of life. Your questionnaires tell us what matters to people like you, and guide us about what is important for quality of life. We hope this will help us to improve our services and care.
Who is eligible? People living with MND in Lothian
What is involved? A 60-page questionnaire on Quality of Life impact of MND, which can be repeated every 6 months
More information Visit the TONiC website; and/or contact us to request an Information sheet

 

Name of study

Patterns of Behaviour and Personality in People with Neurodegenerative Disease and their Family Members

Status Fully recruited – no longer accepting new participants
What is the aim of the study? This study is examining patterns of behaviour and personality in people living with MND and their family members.
Who is eligible? Everyone living with MND in Scotland
What is involved? An interview with Caroline McHutchison at home, with the person living with MND and then their willing family members
More information Download the Information sheet

 

Name of study

Digital Legacies

Status Fully recruited –  no longer accepting new participants
What is the aim of the study? The research team aims to explore your experiences of being diagnosed with MND and the feasibility of creating a digital legacy. It will also investigate how you feel that the digital legacy will support the children and young people in your family whilst they care for you, and additionally, when you are no longer here.
Who is eligible? Everyone with MND who has children under 24 years old
What is involved? Two interviews with Olly Clabburn at home, with digital communication in between and in follow up
More information This study is no longer recruiting. For information please email Olly Clabburn