ProSec3, evaluating the clinical management of excessive saliva in patients with motor neurone disease, has opened to recruitment. Sheffield has recruited its first patients into the study, and other sites up-and-down the country (20 in total!) are primed to start recruitment very soon. The study is jointly funded by Marie Curie and the Motor Neurone Disease Association. Click here for more information about the study.
We would like to welcome our 2 new PPI representatives to the group, Lisa Milella and Nicola Drewry. Having members of the group who can provide us with their personal experiences and opinions during our discussions of MND research is vital to ensure that the research is feasible and holds the patients at its core. Please see the members page for more information about these individuals.
On Friday 5 May in America, the FDA, the organisation that approves drugs, announced that they’d granted a licence for the drug known as a Edaravone (to be marketed as Radicava) for the treatment of MND. It’s unexpected news and we’re currently working out what this means for people with MND in the UK.
Edaravone works as an anti-oxidant which helps remove damaging agents from the body and this prevents or delays cell damage. In clinical trials, Edaravone has been shown to slow the progression of MND potentially helping people preserve function longer.
We are in contact with Mitsibushi-Tanabe in the USA and have asked them to connect us with their European office in order to understand their plans for licensing in Europe.
More information on Edaravone is available on the ALS Association website. More information on clinical trials in general is available on our website and in our research information sheet.
As we learn more about the developments of the drug we will keep everyone updated.
New website released which gives support to People Living with MND about using non-invasive ventilation. Please visit the website via www.niv.mymnd.org.uk
The new MyTube website has now been released, please click here to visit the web-based resource for more information about feeding tubes.
Last year (Feb 2016) NICE published a national guideline about the assessment and management of Motor Neurone Disease (MND-assessment and management nice.org.uk/guidance/ng42) which aims to improve care for people living with MND from diagnosis to end of life.
It covers a number of areas of concern, making recommendations for practice based on the available evidence and recommendations for future research.
Some of the areas covered had been reviewed previously in a respiratory management guideline (Motor Neurone Disease – the use of non-invasive ventilation in the management of motor neurone disease. NICE CG105 2010) which made recommendations about diagnosis and multi-disciplinary team working as well as respiratory assessment and management. These recommendations are included in this more comprehensive guideline (NG42) and where additional ones have been made this is indicated in the guideline (new for 2016).
Recommendations have been made for the first time in the following areas:
• cognitive assessment
• psychological and social care support
• planning for end of life
• managing symptoms including muscle problems, saliva, equipment and adaptations, nutrition and feeding tubes, communication including ACC and cough effectiveness.
These guidelines offer comprehensive evidence-based recommendations, providing patients and carers with the knowledge to make informed decisions about their care and placing a responsibility on providers (health care professionals and commissioners) to ensure equitable care and access to that care.
For more information please click here