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

News Archive: 2015

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

September 2015

PPI Training Day

Members of the group recently attend the PPI training day run by Sheffield Teaching Hospitals and provided the following feedback:

‘I recently attended the free PPI Training offered by Sheffield Teaching Hospital Research Department.  Overall, the training empowered me with knowledge that will definitely help me to confidently perform my duties as a member of the Sheffield MND Advisory Group.’

‘I recently attended the training day that Sheffield Teaching Hospitals provide for new and existing members of PPI groups.  It was a very full day but every session was informative and helpful in preparing members for the role they will be playing as part of the group.  It was especially useful to look at a couple of research proposals at the end of the day and be confident about revising and commenting on them.’

 

 

July 2015

The Reach project

The Reach project aims to improve the quality of life for patients living with MND and/or stroke patients. The development team wants to carry out a study to understand the experiences of patients with upper limb muscle weakness in their everyday lives.

The study is using a user centered design process, to determine the key movements that the patient needs to carry out day-to-day tasks. The results from this study will be fed into further research into devices that can be used to improve the quality of life of people with upper limb weakness.

If you are interested in taking part or would like further information, please contact Annette Taylor on annette.taylor@sheffield.ac.uk.

SITraN Newsletters

The latest version of the SITraN newsletter has been released and includes an article on a member of the SMND RAG Julie Drakeley. Please click here to download.

June 2015

SMND RAG Success

Inspired by the success of the SMND RAG, another group has invited a member to talk about the benefits of being a member of the research advisory group at their meeting.

PPI Training

As a result of attending the Consumers in Research event and having a presence there, we are aware that the trust is offering PPI training.

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.
Please click here to register

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