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

News Archive: 2018

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

 

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