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.
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).
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
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?
The 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.
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.
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
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
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
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
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
Different ways to support breathing were the main focus of the second clinical session on day two of the Symposium. Researchers from two MND Association funded studies presented their work looking at diaphragm pacing and also the withdrawal of ventilation support.
The NeuRx diaphragm pacing system (DPS) is a device developed to aid breathing by stimulating the large muscle that helps you to breathe – the diaphragm.
In 2011, the Food and Drug Agency (FDA) in the USA approved NeurRx DPS as a treatment for respiratory failure in motor neurone disease (MND). The treatment was not required to go through the series of clinical trials that is needed for a new drug. The FDA approved it on the basis of one small study because at the time the probable benefit to health outweighed the risk of using it.
Due to this lack of clinical evidence, this prompted further research in the USA and Europe to test its effectiveness on symptom management and survival. Continue reading
Karen Pearce, the MND Association’s Director of Care, blogs about presenting the Association’s wheelchair project at the Allied Professionals Forum, which happened prior to the International Symposium on ALS/MND.
At the Allied Professionals Forum I had the opportunity to present our wheelchair project, particularly looking at anticipating future needs and the powered neuro wheelchair. The presentation seemed to go well, however there were no questions at the end. In my mind this could mean a few things, either what I had said wasn’t interesting, or it wasn’t relevant or maybe I had covered everything people wanted to know. This felt unlikely to me.
Thankfully after the presentation a few people approached me, a couple to ask for our evidence so they could influence the people who provided powered wheelchairs in their country. Another person asked about how a feature of the powered neuro wheelchair could possibly be used if the wheelchair was tilted back. Fortunately she uses wheelchairs from one of the manufacturers we work with. Following my talk she is going to ask them for a demonstration model for her to try – a fantastic example of sharing work that will now hopefully support across many countries. Continue reading
While muscle cramps are a very common symptom of motor neurone disease (MND) there is currently few effective ways of management and treatment.
Even though muscle cramps are frequently reported, not a lot is known about this symptom, as research has been limited. You could say they were the Cinderella of MND symptoms – lacking attention and their moment under the spotlight compared to other symptoms.
A lack of research means we do not know how frequently people who have MND experience muscle cramps, how severe they are and whether the nature of the muscle cramps change as a person’s ALS progresses.
It is important to study this symptom, as successful management of muscle cramps will impact on quality of life.
A change in focus – Cinderella symptom no more!
A team at the University of California carried out the largest research study to date on muscle cramps in ALS, and Dr Bjorn Oskarsson (pictured) presented their work on the first day of the Symposium. Continue reading