Our mission is to empower and enable patient & public involvement in motor neuron disorders research

News Archive: 2012

December 2012

INVOLVE Conference

SMND RAG members Emily Goodall and Anne Quinn attended the national “Patient and Public Involvement” (PPI) conference held in Nottingham.  This biannual conference was organised by the National Institute for Health Research and was attended by over 450 delegates. There was a dazzling array of 51 oral presentations/workshops and 79 posters showcasing how patients can, and do, get involved in the research process across health related disciplines.  We were taken aback by the scale of the event where the enthusiasm was infectious, leaving us with plenty of ideas on how to expand the work SMND RAG does.  We are still the only PPI group of its type in the UK for MND but hope that in the future others will see the benefits Sheffield researchers have gained and replicate the group model to involve those affected by the disease in their research proposals.  To view the SMND RAG poster please click here.

Sheffield MND Care Centre website

The new MND Care Centre website for Sheffield was launched earlier this month, to find out more please click here.

November 2012

SMND RAG linked to Clinical Research at STH

Patients and members of the public reviewing PPI activity within Sheffield Teaching Hospitals NHS Foundation Trust can now see how to get involved with SMND RAG and learn more about the groups activities. Please see the Clinical Research website for more details.

Successful application to Waitrose Community Matters scheme

SMND RAG applied to Waitrose for SITraN and MND to become one of the three charities for their scheme – read see the Neuro Research Newsletter or the news link here.

October 2012

New members welcome

The ‘Sheffield Motor Neurone Disorders Research Advisory Group’ (SMND RAG) is a committee that brings together patients and carers from the South Yorkshire area who wish to be actively involved in ensuring patient and public involvement in Sheffield MND research.  If you are interested in becoming involved with the group you can access more details about the role and application form here or please contact us for more details. You are also welcome to attend a meeting and can have a tour of SITraN to see if you would like to become involved with this group.

Telemedicine – Patient/Carer involvement required

Telemedicine in MND may be able to bring specialist care locally to the patient.  A pilot study of telemedicine in MND is planned for Sheffield.  To develop the software we are keen to understand from patients and carers what questions should be asked and investigate what equipment would be needed.  If you are interested in becoming involved in workshops please contact Dr Esther Hobson 0114 271 3188 or via esther.hobson@gmail.com.

September 2012

Yorkshire PPI event

Ann Quinn attended a PPI event in Yorkshire and wrote a short summary of the experience which can be read here.

SITraN nominated for design award

To celebrate the best new buildings in Sheffield the Sheffield Civic Trust has opened voting for the Peoples Design Award 2012 and SITraN is in the running.  Please register your vote for our world leading research institute athttp://www.sheffieldcivictrust.org.uk/designaward/ and help raise awareness of MND. The voting site will remain open until 12th November with winners announced on 27th November.

August 2012

INVOLVE poster accepted

SMND RAG are presenting at the 8th National INVOLVE conference ‘Putting people first in research’ which is being held on 13-14th November. The poster is intended to raise awareness of the group, its format and objectives and success to date.

MND On-line Training

DeNDRoN in collaboration with Motor Neurone Disease Association (MNDA) UK and Scotland have recently launched an MND on-line training package.This has been designed for researchers and health care professionals who are keen to improve their knowledge about the condition, its management and the potential for research into this disease. Resources and on-line tests have been developed to provide the learner with a holistic knowledge base of the condition which they can utilise to support their professional practice.

DeNDRoN’s Motor neurone disease (MND) Clinical Studies Group (CSG) have been essential in driving this piece of work forward. The MND training resource can be accessed through the website at http://www.dendron.nihr.ac.uk/researchers/training/.

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