There is still so much to learn about this devastating disease, but thanks to cutting-edge research projects happening around the globe, progress is being made towards developing new drugs and treatments for people with MND. Here is an update on all of the latest research news.
Genomic Translation for ALS Clinical Care (GTAC) study
This study is called “Genomic Translation for ALS Care,” or “GTAC” for short. GTAC is an international observational study, led by the University of Columbia in the US.
The study will investigate why a person develops MND and why their symptoms present and progress with particular patterns.
What is the purpose of the study?
Researchers 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 neurone degeneration begins, and how or why it progresses.
The study will also store cells from your blood that can be used in future studies.
Can I take part?
You can take part if; you have a diagnosis of motor neurone disease; live in Scotland; are not on invasive respiratory support or non-invasive support for more than 22 hours per day; and are not pregnant.
Researchers hope to recruit 50 people from Scotland into this study. It requires a one off visit to Edinburgh to have your blood taken and for the research team to carry out your initial examination and assessment. Follow up is every three to six months, and this can be over the phone with the research team.
Mr Colin Jones, from Grampian, who has taken part in the study, said “On the morning of Friday 7th April, my wife Shirley and I had the great honour of being the first to participate in the GTAC observational study at the Anne Rowling Clinic in Edinburgh.
“We received a very warm welcome by the Study Team who impressed us with their enthusiasm and professionalism.”
Scottish MND Register
We are delighted that we now have 91% of people with MND in Scotland registered to take part in research. 86% of people with MND in Scotland have also donated an anonymous sample of blood or saliva for research.
Thank you to everyone who has done this and if you haven’t but would like to, please visit www.care-mnd.org.uk.
Clinical Audit Research Evaluation – MND
CARE-MND is an exciting new national platform empowering people living with MND in Scotland to directly influence the provision of clinical care and research.
Improving clinical care across Scotland is our highest priority. To do this we are working with healthcare professionals and auditing the provision of care nationally and by individual health board. The team is closely monitoring trends in the number of people with MND in Scotland as well as their individual clinical characteristics and care needs. This will allow them to shape the development of high-quality person centred services delivering the best care in a timely way.
Your participation and involvement in CARE-MND is vital to improving care and bringing more research studies, including trials, to Scotland.
Through CARE-MND’s one stop website www.care-mnd.org.uk you can:
MND Scotland is one of the founding partners of CARE-MND. The CAREMND platform is a partnership with the Euan MacDonald Centre for MND Research.
Edaravone (Radicava) approved to treat MND in USA
Since the announcement by the Federal Drugs Agency (FDA) of their decision to licence Edavarone/Radicava for people with Motor Neurone Disease (MND) in the USA, there has been extensive discussion and reviews of the clinical studies by MND clinicians across Scotland and Europe.
Currently this drug is not licensed for use in Europe (including the UK). Once licensed, it would then need to be approved for use in Scotland by the Scottish Medicines Consortium (SMC). Currently we do not know whether the manufacturers of the drug have requested the European Medicines Agency, (EMA), to consider licensing, and if so how long this process might take, or whether it would be successful.
19 June 2019
17 June 2019
17 June 2019
17 June 2019