The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

Latest News

October 2016

Cough Augmentation

The equipment for cough augmentation is now back in production so the MND Care Centre are able to start actively recruiting into this service evaluation.

August 2016

Skype

The SMND RAG are able to offer members the opportunity to attend meetings remotely using Skype.  We can have up to ten video streams (9 plus the SMND RAG) visible at one time, if there were to be any extras they would only be able to join as audio.

July 2016

Gene therapy strategy against C9ORF72 related ALS

Dr Guillaume Hautbergue gave an interesting overview on the gene therapy project his team are currently working on. We look forward to further updates on the progress.

April 2016

SITraN Open Day

The SMND RAG will have a presence at the next SITraN open day where you can find out about the research into neurodegenerative diseases like

  • Motor Neurone Disease
  • Parkinson’s Disease
  • Alzheimer’s Disease

You will be able to meet the scientists, watch demonstrations and take a tour through the labs.

To register please email neuroscience@sheffield.ac.uk

March 2016

Consumers in Research event

Members of the SMND RAG will have a presence at the Consumers in Research event on 20th May 2016 – The Circle, 33 Rockingham Lane, Sheffield, S1 4FW.  The event provides an opportunity to talk to patient advisory panels about their experiences of being involved in research, and helping to shape future research and improve patient care.  The event is informal so please drop in anytime 12.00 – 3.00.

For further information and to reserve a place please, contact Lydia Harris lydia.harris@sth.nhs.uk

January 2016

The Involve Me Network

‘Involve me, Sheffield CCG’ has been set up as a way of involving people who care about their local NHS and who would like to be kept updated, or get involved and have their say, on commissioning decisions for the benefit of Sheffield people.

They want to create a relationship with as many people as possible to give people the opportunity to hear what’s really going on in the local NHS ‘straight from the horse’s mouth’ and to gather views on health and social care to inform the key decisions that we make.

For more information please click here

December 2015

Encore Anywhere

Dr Esther Hobson presented the Encore Anywhere project to the group at a recent meeting.  The study is to help patients to use non-invasive ventilation

The study involves patients who have just started to use breathing machines (NIV). Half  of the patients will be monitored using a modem attached to their NIV machine.  It collects information about how someone is using the machine (when they used it, how long for and whether there are any problems).  The information is automatically sent by the mobile phone network to the team in Sheffield.  We hope this will help patients use NIV for longer and gain more benefit. The study has already started and will recruit up to 40 patients over 2016.  The study has received support from Philips, who make the breathing support machines.

You can find out more about breathing support machines (NIV) on this website:www.mymnd.org.uk

November 2015

Project reviewed

The group were involved in reviewing the national MND database earlier in the year, this has now been put forward for inclusion on the NIHR Clinical Research Network (NIHR CRN) Portfolio. The is an important step as the portfolio consists of high-quality clinical research studies and are eligible for consideration for support from the Clinical Research Network in England.

Head Up Project – next phase

The next phase of the Sheffield Support Snood project is due to start recruitment during October 2015 and will run for a year.  The study aims to recruit 10 people with MND who experience neck weakness at each of the ten participating centres.  For further information please contact annette.taylor@sheffield.ac.uk.

October 2015

New website launch

We are delighted to share with you our newly redesigned website, the new look website follows the SITraN (Sheffield Institute of Translational Neuroscience) template to enhance and streamline the user experience across all sites. The site will be updated on a regular basis with news, research projects and new content, so please keep visiting the website!

We hope you like it and we encourage you to contact us and send your feedback and enquiries.  Please forward any comments to smndrag@sheffield.ac.uk

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