Commitment to COMMENDable research

Whilst the vast majority of MND research happens in the lab, there is also an increasing amount of research activity looking into how best to manage the various symptoms of the disease.  There are a lot of unanswered questions as to ‘What Works and What Doesn’t?’ and without a decent level of evidence, it is increasingly difficult in these cash-strapped days to get new or even existing types of therapy adopted into mainstream statutory care.

One such ‘Cinderella’ subject is psychological support for people with MND. It’s hardly surprising that studies show almost half of people diagnosed with MND experience depression and almost a third experience anxiety, yet there is very little guidance on how to best address these symptoms. As a result, formal psychological support is not routinely offered and where it is, the particular approach taken is based on best judgement rather than robust evidence.

NIHR-logoSo, it was encouraging news when last year the research funding arm of the NHS, the National Institute for Health Research (NIHR), announced a call specifically for projects to look into the ‘Clinical impact and cost-effectiveness of interventions to improve the psychological health of people with MND’.  The result of that funding call is a major new therapy research trial, led by Dr Rebecca Gould of University College London and Professor Christopher McDermott of University of Sheffield, that will start in December 2017.

“Psychological distress is such a poorly-recognised and investigated aspect of MND, not only for the patient but also of course for their carers and families” says Dr Gould.

“Needless to say, it can have a profound effect on quality of life, but some studies also indicate that it may also be linked with reduced survival.

“We were delighted that the MND Association was keen to support the proposal, not only by lending their expertise, but also by offering to contribute up to £80,000 to help support the therapy costs, which are not covered by the £1.3 million NIHR award.”

The COMMEND study (Acceptance and Commitment therapy for people with motor neuron disease) will focus on a particular technique known as Acceptance and Commitment Therapy (ACT), which has been shown to be beneficial in chronic pain and other chronic physical and mental conditions.

Dr Gould and her colleagues have divided the study into two parts; the first part, taking up to 19 months, will focus on developing an ACT intervention that is specifically tailored to the needs of people with MND. This will occur through a series of workshops and interviews with people with MND, carers and healthcare professionals. Once the intervention has been developed, a small number of volunteers will be recruited to check the ease of use and appropriateness of the therapy. Once they are confident they have the ‘right tools for the job’, the researchers will conduct a randomised trial (run in a similar fashion to a drug trial) in almost 200 people with MND to find out whether ACT can improve psychological health and quality of life. The trial will consist of up to eight face-to-face sessions held at the participant’s home or in GP surgeries (videoconferencing sessions will also be offered where necessary). Carers will also be asked to complete some short questionnaires to check whether there are any knock-on effects on their quality of life. The study is set to initiate later this year, with recruitment for the workshops due to start in December 2017. Recruitment for the first part of the study aimed at checking the ease of use and appropriateness of the therapy is expected to run from June 2018, and the randomised trial from July 2019.

“We were thrilled by the enthusiastic response when we first raised this study with colleagues in MND centres across the country. We hope that at least 14 of the Association’s Care Centres will be able to take part in the main trial in due course.

“Ultimately, we hope to demonstrate that ACT has a positive and cost-effective impact for people with MND, which would provide the evidence base that will support the roll-out of the intervention across the NHS – and perhaps in other countries as well.”

 

Networking to progress in the world of science: Mini-Symposium on MND

Conferences and symposia are a crucial part of the research world – not only for the amount of knowledge that is communicated to large audiences but also for the exchange of ideas on a more inter-personal level. Novel ideas are created there as well establishment of collaborations that might lead to new research projects and clinical trials – all in all, putting a bunch of researchers in a venue with a projector, coffee and biscuits can only lead to good things!

One of the recent events that I had the pleasure to attend was a small-scale conference – the Mini-Symposium on generic disease mechanisms in MND and other neurodegenerative disorders. Held at the Brighton and Sussex Medical School in late June, this event was a precursor to the inauguration of a new MND Care and Research Centre for Sussex, directed by Prof Nigel Leigh. Continue reading

Life of an MND researcher: part 1

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.

We all know that rigorous research is the key to finding a cure for MND. Scientists are working hard every day to find the causes of MND, developing new treatments that would help tackle the disease and also looking for new ways to improve the quality of life of people currently living with the disease. But what does it take to have research at heart of everything you do? What is the typical day in the life of a researcher and what does carrying out a research study actually involves?

We asked eight researchers to give us an idea of what their research is all about and what their typical day looks like. Read about four of them in the following blog and keep an eye out for ‘Part 2: PhD edition‘ in the next few days… Continue reading

New research projects agreed to help improve palliative and end of life care

Today we announced the results of an exciting new funding partnership with Marie Curie. Together we will be co-funding three research grants that help to answer some questions that people with MND identified as a priority for end of life care research. This is the first time that the MND Association and Marie Curie have worked together with a joint funding call. Each organisation has committed an equal amount of money to the funding of these projects, a total cost of £450,000 over the duration of the projects.

Continue reading

Evaluating a new neck support for people living with MND

We know that neck weakness can be a difficult symptom to manage in people with MND, and that the current offering of neck collars and supports do not always suit everyone. In order to come up with a solution to this, we are funding Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) to develop a new type of neck support for people with MND (our reference: 928-794).

5 b (3)Designers, health professionals and engineers, along with people with MND, have developed a new support called the Sheffield Support Snood. The Snood is an adaptable neck collar, which can be modified to offer support where the wearer requires it most.

The Snood was initially tested in 26 people living with MND in 2014. The current stage of the project, called the Heads Up project, will evaluate the Snood in around 150 people. This will contribute towards providing the necessary wider consumer testing of the Snood, which in turn will help when looking for a commercial partner to take on the manufacture of this product. Continue reading

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.

Continue reading

The MND Register of England, Wales and Northern Ireland

What is the MND Register?

The MND Register is a major five year project that aims to collect and store information about every person living with MND in England, Wales and Northern Ireland. It is led by world-class MND researchers Prof Ammar Al-Chalabi and Prof Kevin Talbot, at a cost of £400,500 (our grant reference: 926-794).

Why is it important?

MND is believed to affect 5,000 people in the UK at any one time, however the true figure is not known as there is currently no way of recording this information. The register aims to provide us with the true number of people living with MND in the UK.

The information collected will answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people. The register will connect people with MND to researchers, including those conducting clinical trials, and will provide valuable information to guide the future development of care services.

Print

How will information be collected and used?

The register will be advertised nationally to all people with MND and related healthcare professionals. People with MND will be provided with detailed information about the register, and after some time for consideration, they can agree to take part. Their information will be recorded onto a secure database, either by a healthcare professional, or by the person with MND themselves through a register website (this will then be checked by a healthcare professional). Continue reading

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. Continue reading

Is frontotemporal dementia different when found with MND?

Some people with MND develop an increasingly recognised form of dementia, known as frontotemporal dementia  or FTD (for more information visit http://www.ftdtalk.org/). The main symptoms of FTD include alterations in decision making, behaviour and difficulty with language.

The relationship between MND and FTD is not well understood. Prof Julie Snowden and PhD student Jennie Saxon at the Cerebral Function Unit in Salford (University of Manchester) are aiming to establish whether MND combined with FTD is subtly different to when FTD is found on its own (our grant reference: 872-792).

People diagnosed with FTD-MND, with FTD alone, and those with no form of dementia will perform a series of short cognitive tasks. These will test things including a person’s ability to recognise emotions, draw inferences about the thoughts of others, their ability to concentrate, organise actions and understand language. Continue reading

Choices around invasive ventilation

Mechanical ventilation for people with motor neurone disease (MND) is a sensitive and little discussed topic. Yesterday’s respiratory management session of the International Symposium on ALS/ MND began with several interesting and thought provoking presentations on the subject. Pia Dryer from Aarhus University Hospital in Denmark presented the results of a review of their respiratory service over 17 years, including a discussion of invasive ventilation. Dr Mike Davies is a respiratory consultant at the Papworth Hospital in Cambridge in the UK, where he and his colleagues run a weaning service supporting people to come off invasive ventilation.

Choosing ventilation, or not

Summary of respiratory choices in Denmark

Summary of respiratory choices of people with MND in Denmark

Over 400 people with MND had been treated at the Home Mechanical Ventilation service since its inception in 1998, Pia Dryer explained at the beginning of her talk. During the discussions in clinic people had the choice about the options available for managing their breathing symptoms, some chose no ventilation, others non-invasive ventilation (NIV). From NIV some then progressed to invasive ventilation or tracheostomy, and finally some chose to go straight to invasive ventilation. People with MND had the choice of all of these options, 90 of them chose either NIV and then invasive ventilation or invasive ventilation first without NIV. The talk was really brought to life by showing clips of Birger Bergman Jeppesens the star of a number of films on YouTube. He was the first patient to ask for invasive ventilation at the Aarhus clinic. Dr Dreyer went on to talk about the legal and ethical aspects of withdrawing ventilation from people with MND at the end of life, a topic that was discussed in more depth later in the session. Continue reading