This blog is part of the ‘Virtual Highlights’ collection of articles, where you can read about the content of some of the talks and posters presented at the Virtual 31st International Symposium on ALS/MND. By the Education and Information Team, at the MND Association in England, Wales and Northern Ireland.
2020 – the year of the Covid-19 pandemic, was an extremely challenging year. We all had to adjust and accept increasing dependency on virtual technology, for almost every aspect of living and working.
Staging a global research symposium in 2020 seemed a precarious goal. Like many, our team wondered if the International Symposium for ALS/MND would happen. It became apparent that if it did, it would have to be virtual. And so, we asked, would it work? As soon as we linked into the new online platform, it was clear that recent leaps in technology would make this a positive experience.
Would networking be more difficult? Yes, of course. Would a physical event have enabled more immediacy for informal sharing? Yes, undoubtedly. That said, the virtual platform significantly increased reach, improved accessibility and provided opportunities to actively participate. Joining sessions was easier, without having to physically dash across a massive hotel arena to find the next one on your list.
A broad range of subject matter was available, but a central theme began to emerge for us. Although broached before, there seemed to be stronger emphasis on combining multiple tactics to control and defeat ALS/MND. In other words, finding out how to close in on the disease from many directions, simultaneously.
As ever, before the Symposium, the International Alliance of ALS/MND Associations kicked off with the Allied Professional Forum (APF), an educational and training event for health and social care professionals who specialise in ALS/MND. With presentations exploring recent clinical practice and social work, terms such as ‘multidisciplinary’ and ‘holistic care’ were commonplace. An inclusive model of care is now widely accepted in the support of people with or affected by the disease. It was clear that APF delegates were keen to work collaboratively, beyond their own discipline, to ensure person-centred care.
In the UK, increased inclusion of supporting services in care was found. For example, Diane Aldridge, a social worker at Salford Royal Hospital, is dedicated to empowering people with MND to make informed decisions. During her session, she expounded the virtues of quality assured information (such as our provision at the MND Association) and how this can help both the professional and the patient. Our helpline and support services manager, Jacqui Frost, gave an inspiring presentation about the positive emotional impact of our support grants, which are provided in collaboration with professional assessment of need. These grants can improve quality of life for individuals and assist memory building for families.
Services are also becoming more joined-up, as outlined by Jane Leicester and Dave Derry from the Manchester MND Care Centre. Their response times have improved, by connecting respiratory services with those providing MND support. Jenny Rolfe, a senior occupational therapist, also emphasised the need for person-centred care, as demonstrated in her work to combine both physical and social considerations for wheelchair provision.
The APF also reflected the increasing use of virtual technology in patient communication and assessments. This has been forced by the pandemic but looks likely to encourage a more flexible approach in the future, with benefits for patient access and best use of constrained professional resource. This was a common thread, exemplified by Christina Frederico from the Manchester MND Care Centre, with her multidisciplinary work in virtual pre-gastrostomy clinics. While born out of necessity, these virtual clinics helped prepare patients for the procedure and will be ongoing. With similar focus on virtual access, Cathryn Pinto from Southampton University had conducted research leading to the design of an online therapeutic facility, funded by the MND Association. This initiative explores coping and living well with MND (CALM), to introduce ideas on mindfulness and improving wellbeing, within our ever-expanding virtual environment. The increase of virtual access to therapy and care looks set to enable more patient choice, with multiple strands to the options professionals can offer. Cathryn also presented her research as an ePoster at the Symposium (COG-11), watch her short video summary:
From Research to Care at the Symposium
At the main Symposium, the theme continued, with strong messages that multiple or combined approaches may be key to understanding and tackling the disease.
We have previously heard that a range of drugs, timed against identifiable biomarkers might be needed to control MND/ALS – and increased numbers of drug trials are in motion. In the not so distant future, a range of complementary interventions may be available, bringing hope of effective approaches to slow down or interrupt the disease.
Dr Sabrina Paganoni from the USA gave evidence from the CENTAUR trial of the experimental drug cocktail, AMX0035, that involved collaboration across continents (C7). The trial made it possible for participants to use dissolvable meds, administered through a feeding tube. This reflected focus on how to get targeted drugs into the body to do their work, yet another example of multiple or complementary approaches in action. A significant presentation on this was delivered by Dr Agessandro Abrahão and Lorne Zinman from Toronto in Session 6: Therapeutic Strategies (C16). They have been exploring the use of ultrasound to temporarily open the blood brain barrier, allowing stem cells or large-molecule drugs direct access into the brain and spinal cord. This non-invasive procedure was safely tolerated and feasible, unlike more intrusive methods. It was exciting to see that this work produced the first visual demo of a glymphatic waste clearance system in humans, which may lead to the ability to control lymphatic drainage of protein waste (a known cause of degeneration in ALS/MND).
Virtual technology has also influenced research. In Session 4: From Research to Care, the presentation by Professor Orla Hardiman from Ireland (C8) highlighted personalised medicine and the importance of global registers. Collection of patient data by virtual means is helping researchers learn more about the disease in terms of ancestral descent and mixed descent. Our MND Register in England, Wales and Northern Ireland is growing and the work in other nations bodes well for data comparison in the future.
Professor Carolyn Young from the UK referenced the use of patient reported outcome measures (PROMs), where remote assessment and controlled collaborative input is helping to extract expanded study data from patients (C9). This also speeds the process of gathering and collating information, saving valuable time for the health and social care professionals involved.
With all major challenges comes unexpected progress…
While 2020 has been difficult, the enforced learning in technology for patients and professionals looks set to bring important advances in data sharing. The pandemic has thrown many obstacles in our way, but with all major challenges comes unexpected progress. Hope springs from the sense that studies are feeding each other more and more, not just through collaboration, but in sparking invention. There is a great deal of creativity in science at the moment and this was apparent throughout the sessions.
It has been an amazing feat to bring all of this together in a virtual space, for the first time. We hope that future delegates will experience the buzz and collaboration of a face to face symposium but echoing the theme of ‘multiple approaches’ there certainly seems to be a case for offering online attendance again too. It can bring wider inclusion, awareness and education. Our thanks and congratulations to everyone involved, for arranging or presenting at such a fascinating and encouraging event.