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

Latest News

June 2018

Revolutionary neck support technology transforms lives of MND patients

A revolutionary neck collar designed to ease pain and make everyday tasks such as eating and communicating much easier for patients living with motor neurone disease (MND) is now available to healthcare professionals and individuals across the world. To read more please click here

April 2018

Researcher Feedback – ProSec3

ProSec3 – A multi-centre evaluation of excessive saliva management in patients with motor neurone disease

Recruitment recently commenced on a UK-wide study headed by Sheffield’s Prof Christopher McDermott called ‘ProSec3’. This research aims to build on knowledge gained in two smaller projects previously carried out at the Sheffield MND Care and Research Centre, surveying the prevalence and treatment of saliva problems in patients with motor neurone disease. At present, there are no specific guidelines available to clinicians for managing this often distressing and potentially life-limiting symptom frequently occurring in people with MND. By working with teams across the country to collect data from a large cross-section of the MND population, we hope to gain a better understanding of how common problems with saliva and secretions are, and the most effective methods for controlling these symptoms. Such knowledge should ultimately improve the outcomes of patients who develop problems with excess saliva. The SMND-RAG have provided invaluable input throughout the development of all iterations of ProSec, helping us to quickly gain ethical and HRA approvals and start this study ahead of schedule. We are extremely grateful to the SMND-RAG for all of their efforts!

ProSec3 Team, University of Sheffield and Sheffield Teaching Hospitals.

March 2018

Researcher Feedback

One of the main aims of the SMND RAG is to assist researchers by reviewing research study documentation ensuring that patients and carer’s views are considered. A researcher who recently accessed the group for this service provided the following feedback:

The group were invaluable when we were submitting our grant application. They gave us some really useful feedback on our proposal and allowed us to further refine our ideas… and we ended up getting the grant! So a huge thank you to the group for your support – it is greatly appreciated.

January 2018

Sheffield MRI-PET Scanner appeal tops £1 million

The campaign to raise funds for an MRI-PET scanner in Sheffield has now broken through the £1 million barrier, the Sheffield Scanner will be the first of its kind in Yorkshire and one of only eight in the UK. To find out more please click here

New members welcome

Can you help researchers understand Patients’ & carers’ priorities?

The aims of the Research Advisory Group are to:

  • Enable the perspectives of patients and carers to be included in research proposals
  • Provide knowledge from each member’s experiences of MND
  • Identify and prioritise research topics from the patients’ perspective
  • Improve recruitment to research studies
  • Help identify improved treatments from research results
  • Give patients and carers a more authoritative voice
  • Help build public credibility and trust in clinical research
  • Improve the input from patients and carers to research projects
  • Identify any barriers to patient’s effective involvement in research
  • Comment on “Patient Information and Research Results Sheets”
  • Help write lay summaries for research proposals
  • Raise public awareness of MND research

If becoming a member interests you and you would like to find out more about the group (you would be welcome to attend a meeting and visit SITraN) please email Annette Taylor at smndrag@sheffield.ac.uk

The Person Specification, Terms of Reference and Membership Form are available to download here

 

December 2017

Presentation – The role of C9orf72 cellular recycling

Dr Christopher Webster gave an informative presentation to the SMND RAG on groundbreaking research that could pave the way to for potential future drug development.  Scientists from the University of Sheffield have discovered a novel function of the C9orf72 protein which is linked to amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) – giving a new insight into the most common genetic cause of the degenerative diseases.

Please click on the following link for a brief review of the project – brief review

The pioneering study has been published in the EMBO Journal, please click on the following link to view the full publication – full publication

 

November 2017

myTube website wins the Nutrition Resource of the Year award by Complete Nutrition Magazine

Pioneering patient-led information website myTube wins the Nutrition Resource of the Year award by Complete Nutrition Magazine 2017. Patients and carers shared their insights into difficult care decisions they have faced in living with Motor Neuron Disease and made a pragmatic, honest and personal video resource website to inform others thinking about tube feeding in case of compromised eating and swallowing. The patients and carers took the research done at SITraN by Prof Chris McDermott’s team and made it real and relevant to everyday life for those affected by MND. For more information please click here

May 2017

Become a patient representative

Would you like to be involved in the decisions made about MND research studies?  Do you think you could act as a delegate for people with MND?  Become a volunteering patient representative for the UK Motor Neurone Disease Clinical Studies Group (UK MND CSG).

The UK MND CSG are looking to appoint a patient representative to join their group that is responsible for developing and monitoring portfolio of MND research studies in the UK.

The representative would have the chance to provide their perspective on new and upcoming clinical studies and to offer advice to other patients when requested.  You would be required to take part in monthly teleconferences (approximately 1 hour long) and to read relevant meeting papers before these meetings (provided via email communication).

If you think you would be a good patient representative, please read the Terms of Reference (pages 11-12) to familiarise yourself fully with the role and the related duties.  If you wish to apply, please send your CV and a supporting letter explaining why you are interested in joining the group to h.hollinger@sheffield.ac.uk by 21 May 2017.

For any further questions about this position, please contact Hannah Hollinger.

Associate Member – Why I joined the SMND RAG

In 2012 I was contacted by the Alumni office of Sheffield University as  I was a student there from 1966 to 1969. Whilst speaking to the student representative of the Alumni office, I mentioned that, whilst studying at Sheffield,  I met my  late husband who was also a student at Sheffield.  He died of Motor Neurone Disease in 2011.  The student arranged for me to visit the university taking in an open day at SITraN.  I was extremely  interested to visit SITraN and very impressed by the excellent research being carried out.

Whilst at the open day, I became an associate member of the group.  I have been very interested  in developments in research and feel that, if required, I am able to comment on the needs and experiences of patient and carer.  I am also happy to proof read any documents.

I think my experience  is as expected and  I do hope to be able to visit SITraN again.

I am very pleased that SITraN  exists.  MND  is a terrible disease.

Voting open for the myTube website

The myTube website has been shortlisted in the nutrition resource of the year category of the Complete Nutrition (CN) awards. It would be good publicity for the website if it were to win it, so it would be great if you could give it your vote. You can cast your vote at:

https://www.nutrition2me.com/cn-awards/2017-cn-awards-voting-form

The website was designed by patients living with MND and their carers, to support the decision to have a feeding tube placed. If you want to take another look at the website please go to http://mytube.mymnd.org.uk/

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