It’s that time of year again when we’re counting down to the annual International Symposium on ALS/MND! This year marks the 35th Symposium, the largest scientific and medical conference specific to ALS/MND, and throughout November we will be posting blogs to give you a preview of some of the research being presented at this year’s event. This global event gives the MND research community the chance to share their work, exchange knowledge and foster new collaborations.
This year, the Symposium is being held in Montreal, Canada from the 6th– 8th December and there is also a virtual option for attendance. The virtual attendance will allow delegates to watch select sessions live, with on demand access for all sessions available after the event (on demand access will also be available to those who attend in-person).
Last year the symposium was attended by over 1300 delegates from 44 different countries, including researchers, healthcare professionals and people from the wider MND community. We look forwarding to hosting this hugely important event and hope to see lots of you there! There’s still time to register if you haven’t already!
Each year we invite plenary speakers who are experts in their fields to provide an overview on topics across MND research and clinical practice. This year we have 20 plenary speakers talking about ALS/MND who will cover a wide range of topics from understanding more about the biology of MND to improving care and support for people with and affected by the disease. Over the last month, we have been taking a closer look at each of our ALS/MND plenary speakers this year and giving you a snapshot of the topics they will be discussing.
Day 2, Session 5B: Respiratory management
Respiratory failure is the main cause of death in people with ALS. Non-invasive (NIV) breathing aids help people living with the condition live longer than any medications currently available. While it’s important to keep working on finding a cure, patients still need effective support for breathing and managing their airways.
In his talk ‘Optimising non-invasive ventilation in ALS’, Professor Douglas McKim from The Ottawa Hospital, Canada, will use clinical cases to discuss the evidence for the benefits of NIV, assessment of respiratory function and the best time to initiate support, as well as multidisciplinary care, community initiation and follow up. This will include the importance of overnight oxygen level tests, how to understand data from NIV devices, ongoing measurements of breathing capacity differences and the implications associated with mouthpiece ventilation. Management of secretions, the timing of PEG tube placements, challenges related to swallowing difficulties and the role of palliative care in making end-of-life decisions will also be discussed.
Day 2, Session 6B: Experimental medicine and trial design
The number of molecular pathways involved in the biology of ALS is increasing, and many of these could be targeted with drugs. There’s also a growing understanding that future treatments for ALS may be similar to cancer treatments: personalised for each patient and possibly used in combination. Using more cell models of the disease for high-throughput drug screening has led to more candidate drugs than ever before, all competing for the limited resources available for clinical trials.
Professor Martin Turner from the University of Oxford, UK will talk about ‘Experimental Medicine to identify therapies in ALS’. In this he will address the huge financial cost of clinical trials that need to involve hundreds of participants, take place over at least a year and take 3-5 years from set up to publication of results in order to show that a treatment significantly slows progression of the disease. Over the past thirty years many trials involving tens of thousands of people have led to just one globally approved drug, riluzole, which only has a modest effect on the disease.
Experimental Medicine (EM) recognises that humans are the best subjects for studying human diseases, especially neurodegenerative conditions. EM includes both discovering important mechanisms behind these diseases and demonstrating which potential drugs are likely to be most effective. To increase the chances of success in trials that aims to show clinical benefits (and to reduce financial risks), it’s important to focus on markers that indicate a treatment is working. The current potential for using neurofilament light chain in groups of participants to prioritise drugs to carry forward into clinical trials will be highlighted.
Day 2, Session 6C: Cognitive and behavioural change
There is a growing understanding that ALS and frontotemporal dementia (FTD) are linked, representing two ends of a spectrum of related brain and nerve conditions called ALS-FTSD (amyotrophic lateral sclerosis frontotemporal spectrum disorders). In people with ALS, estimates of how common cognitive impairment (such as problems with thinking and memory) is can vary from being rare in some cases (for example in people with SOD1 mutations) to affecting about 40% of people. However, it is difficult to get accurate numbers because: some people aren’t fully tested for cognitive changes; there is a lack of good data to define what is normal, making it harder to identify when impairment begins; and current criteria for diagnosing cognitive issues have some limitations.
In his talk ‘Defining concepts and modifiers of cognition in ALS’, Dr Corey McMillan from the University of Pennsylvania, USA will discuss recent collaborations between ALS and FTD researchers aimed at overcoming challenges in understanding cognitive issues in ALS. These efforts include: using the Edinburgh Cognitive & Behavioural ALS Screen (ECAS) to better assess cognitive changes; ensuring that the data used for comparison is statistically reliable and culturally relevant; and developing the Miami Framework which helps researchers categorise both motor neuron problems and cognitive/behavioural changes. This framework also captures the full range of disease stages, from mild muscle and cognitive issues to fully developed ALS, FTD or ALS-FTD.
Dr McMillan will also focus on ongoing research to explore factors that influence cognitive impairment in ALS including: studying genetic factors like specific gene mutations and how other genes might modify the risk; using advanced brain imaging and studies of brain tissue to understand why certain areas of the brain are more vulnerable; investigating how environment and socio-economic status might affect cognitive changes; and looking at recent evidence about molecules like TDP-43, which may impact the type of cognitive decline seen.
By better defining what cognitive impairment means in ALS and understanding its biological roots, researchers hope to uncover why the disease can vary so much between individuals.
Day 2, Session 7B: Autonomy and decision making
Medically assisted dying, which involves giving or prescribing life-ending drugs to someone with a progressive, incurable disease, is legal in more than 25 places around the world. ALS is often used as a key example of such a condition in public and legal discussions. However, there are still challenges in understanding how assisted dying affects the medical care of people with ALS.
Professor Wendy Johnston from the University of Alberta in Canada draws on her reflections from specialist practice in Canada, and current literature, to propose four persistent challenges in assisted dying globally in her talk ‘MAID: From legislation to practice’.
There are several challenges with evaluating assisted dying practices globally:
- Different terms: The terminology used for assisted dying varies, which makes it harder to collect consistent data.
- Data collection issues: Reports from places where assisted dying is legal are the main source of data. However, without enough detailed information, we can’t answer important questions about fairness and whether the practice is being used appropriately. For example, in Canada, it is difficult to separate the experiences of people with ALS from general data. Details like disease stage, socioeconomic status, or available support aren’t included, so we don’t fully understand why someone with ALS might choose assisted dying without further research.
- Comparing countries: It’s difficult to compare assisted dying across different countries because the way data is collected varies. Each country also has its own medical, legal, and cultural context, which can influence how assisted dying is viewed and practiced. To learn from each other, countries need to share more transparent and detailed information.
- Willingness to evaluate: Another challenge is whether there is enough motivation to critically assess assisted dying. In places like Canada, where equal access to healthcare is a core principle, it is important to ask if assisted dying is equally accessible to all and if alternatives to assisted dying are equally available. The willingness of doctors, researchers, health leaders and politicians to question and improve current practices will shape how assisted dying evolves in the future.
Assisted dying is illegal in the UK. The MND Association takes a position of neutrality towards assisted dying. Please see our policy statement for more information.
Session 10, Joint Closing Session
The final talk of the 35th International Symposium on ALS/MND, ‘Outcome measures in ALS clinical trials – the progress to date’ will be given by Dr Angela Genge from the Montreal Neurological Institute at McGill University in Canada.
It has become crucial for ALS clinical trials to have ways to measure meaningful changes in people with the condition while minimising external factors that could affect results.
In her talk, Dr Genge will cover the progress made with current outcome measures and introduce advances in new outcome measures. She will also discuss the relevance of target engagement (assessing how well target areas respond to treatments) and how these outcome measures are used at different stages of drug development, both from academic and industry perspectives.
Stay informed
You can find out more about the International Symposium on ALS/MND on the website and view the full programme for this year’s event.
You can follow our research account on X where we post about research updates and will be posting throughout the Symposium using the hashtag #alsmndsymp.
