Dr Chris McDermott talks about his research at our Annual Conference

This year’s Annual Conference research talk was given by Dr Chris McDermott and focused on his research at the Sheffield Institute for Translational Neuroscience (SiTraN). His talk, adequately named ‘Improving the care and evidence base for symptomatic care’, was a very personal and informative talk to all that attended.

Dr McDermott gave a brief introduction about how he became a neurologist and got involved with MND research. He then talked about non-invasive ventilation (NIV) and how, through healthcare research, they have already gained evidence that NIV increases survival and improves the quality of life for people with MND. After this evidence was obtained, the technique gained National Institute of Health and Clinical Excellence (NICE) approval and NIV is now a standard treatment for people with MND who experience respiratory weakness.

Dr McDermott also mentioned how a ‘cough assist machine’ can be used to help patients cough and get rid of secretions and dirt. Information from the literature suggested a reduction of hospital admissions, and infections, in the year following the use of a cough assist machine for other diseases. The results from Dr McDermott’s MND Association funded study, looking at a cough assist machine for people with MND are yet to be analysed.

The rest of Dr McDermott’s talk focused on his current diaphragm pacing trial (known as DiPALS) being part-funded by the MND Association.

DiPALS

Dr McDermott explained that diaphragm pacing is designed so that people with MND do not have to be on long-term ventilation units, as the remote unit can be carried around when in use. Diaphragm pacing is similar to that of a ‘pace maker’, but instead of the heart it stimulates the diaphragm using an electrical current.

A video was shown of how the instrument’s electrodes are placed onto the diaphragm muscle during a 30 minute key-hole surgery procedure. The pacing unit is then controlled by an external remote at present, but if trials are successful an internal unit could be developed.

Dr McDermott stressed that the mechanisms in which diaphragm pacing acts is not known at present but suggested that it may cause stronger contractions or restore co-ordinated breathing.

An American study of 106 people with MND who had advanced respiratory problems previously found that 81% of trial participants were still alive after one year. Dr McDermott went on to explain that this study had no control group to test whether the diaphragm pacing unit improves life over and above that of current standards of care. However, the American study did find diaphragm pacing to be safe.

The DiPALS study in the UK has been recruiting patients with MND since November 2011 and compares NIV alone (control group) and NIV plus diaphragm pacing. Dr McDermott’s study aims to see if there is a difference in survival between the two groups, whether there is an improvement to quality of life, whether it is less intrusive, and whether the treatment is cost-effective. If diaphragm pacing does show a difference, then this could lead to NICE approval and become standard NHS-provided care in the UK. Dr McDermott went on to say that even if the study is found not to be a viable treatment the trial has already importantly shown that people with MND can have a general anaesthetic.

As the study is ongoing the final results are not available. Results are due in autumn 2014.

Overall, it was great to have an update into Dr McDermott’s research which stimulated an abundance of questions from all those that attended, leaving delegates with a real insight into some of the healthcare research funded by the Association.

More information

If you’re interested in attending a future MND Association conference to hear the latest about MND research, look out for our announcement of our 2013 Spring Conferences. Dates and locations will be announced on our website www.mndassociation.org.

Diaphragm pacing trial information sheet

AGM and Annual Conference summary on our website: http://www.mndassociation.org/news-and-events/events/conferences/AGM+and+Annual+Conference+2012

Research we fund

Busy times in the research team!

The last few days have been quite a hectic for the research development team for many reasons.

Annual conference workshop
This year, our Annual Conference and AGM were held in Nottingham on 11 September. For this event, Kate and I had been set the challenge of organising a workshop on taking part in research. In our workshop, we explained how the contribution of people living with MND and healthy individuals is so important to moving MND research forward. We also gave an idea of the wide range of ways in which people can take part and how much difference there can be between one project and another in terms of the time a participant needs to commit, how much they need to travel, and of course what they actually have to do.

After showing a video clip of Colin Knight, who is living with MND talking about his reasons for taking part in research (we’re currently waiting for approval to put the video on here – so look out for it!), we then asked our audience to read out a few quotes that we’d received from MND researchers. Here’s one of them:

“Without the generous support of patients with MND who donate DNA and tissue to our research department, much of the work that I do would literally be impossible. I am constantly amazed that at a very difficult time in their lives, people have such commitment to provide time and energy to participate in clinical trials and studies, and this is very inspiring to those working in this field” Dr Alice Brockington, clinical researcher.

Taking part in research can be inspirational for both people living with MND and researchers alike. Seeing the determination of both groups to push research forwards really demonstrates that we’re all on the same path and are all looking to help in some way to find the answers to MND and hopefully, one day find a cure.

We’re optimistic that everybody went home with a clearer idea of how they might be able to participate in MND research!

Preparing for the Biomedical Research Advisory Panel (BRAP) meeting
We’ve also been busy preparing the paperwork ready for the next BRAP meeting, who will meet in exactly a month’s time to discuss five applications that have been submitted to us for funding through this grant round. If any of these are successful, we’ll let you know once the start details and costs etc have been approved by our Board of Trustees.

Welcome Dr Sadie Vile!
Last week, we also welcomed our newest addition to the research development team – Dr Sadie Vile, our research grants manager. As she becomes more settled into the role, we’ll ask her to introduce herself on the blog!

Dr Brian Dickie to be drawn by Patrick – the incurable optimist!
Last week we also heard that Brian had won the online vote on Patrick’s Facebook page to be painted next in his quest to paint 100 optimists. Needless to say, Brian was extremely delighted at this news and we all can’t wait to see the painting develop!