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 Invitation letter, information & consent form

 

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

 

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

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

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

Status Recruiting now
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 Recruiting now
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 For more information please email Olly Clabburn

 

Name of study

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

Status Recruiting now
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