Improving Care Practice: Highlights from Perth

This blog is part of the ‘Highlights from Perth’ collection of articles, where you can read about the content of some of the talks and posters presented at the 30th International Symposium on ALS/MND in Perth. All presentations have a code beginning with ‘C’ followed by a number (e.g. C50). This will help you locate the specific abstract mentioned throughout the post in the official abstract book.

Written by Rachel Boothman

While much is being done in the laboratory to find a cure for MND, the Symposium also provides an opportunity to share work aimed at improving care and support.Read More »

TONiC: Creating a quality of life ‘toolkit’ for MND

The MND Association funds several healthcare research projects that aim to improve care and symptom management for people living with MND.

One such project is TONiC, which is examining factors that influence quality of life in patients with neurological conditions, including MND.

So what is TONiC?

Tonic-Logo-1189x841The Trajectories of Outcome in Neurological Conditions (TONiC) study is the largest of its kind in the world. Our funding involvement began in 2015, to help the TONiC team continue with their study (our reference 929-794).

TONiC will hopefully have a significant and positive impact on the lives of all patients living with neurological conditions, regardless of symptoms, stage of illness, age or social status.

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Research on the best practical support for people with cognitive change

We know that some people with MND will be affected by cognitive change and a small proportion of these will develop frontotemporal dementia (FTD). The symptoms of cognitive change include changes in planning and decision making.

To help support people with MND who have these symptoms, and their families and carers, we need to firstly identify or confirm these signs are present and then to find ways to help manage them.

The Edinburgh Cognitive and Behavioural ALS Screen (known as ECAS) has been widely adopted as a good method of detecting symptoms of cognitive change. ECAS is a series of tests that are quick to do in the clinic and are specific to MND.Read More »

ProGas study results on gastrostomy in MND published

Under the leadership of Dr Christopher McDermott, based at the Sheffield Institute for Translational Neuroscience (SITraN), research published today on 29 May 2015 in the Lancet Neurology highlights that better weight management in MND is key to survival.

Following on from initial results presented at the 25th International Symposium on ALS/MND in December 2014, the Prospective Gastrostomy (ProGas) study in MND aimed to investigate the optimal timing for gastrostomy in MND due to the lack of evidence available.

Dr Chris McDermott (Sheffield Institute for Translational Neuroscience, University of Sheffield)
Dr Chris McDermott (Sheffield Institute for Translational Neuroscience, University of Sheffield)

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Heads up! The Sheffield Support Snood

5 b (3)During the second day of the symposium Association-funded researcher, Dr Chris McDermott, presented his highly anticipated research on a new neck support for people living with MND.

Our healthcare research aims to lead to better symptom management and support for people living with MND. We know that neck weakness is an extremely distressing problem in MND and it is very difficult as a clinician to treat this.

Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) said that he wanted to address this problem by working with people living with MND to develop a solution. Read More »

What should be top of palliative and end of life research To Do list?

At the beginning of the week, the Palliative and End of Life Care Priority Setting Partnership (peolcPSP) launched a survey. Its aim is to help those with a passion for finding answers in the neglected area of palliative care research work out what should be top of their To Do lists. The MND Association is one of the partners in the project led by Marie Curie Cancer Care and supported by the James Lind Alliance.

We’re asking people with MND, their families and carers, healthcare professionals and clinicians to rate a set of 83 questions. For each question you can say whether you think it is a low or high priority for research. Read More »