ECTRIMS 2021 – Day 2 The Digital Experience Goes into the Next Round!15.10.2021
The themes of ECTRIMS Day 2 were spinning around Disease-Modifying Treatments (DMTs) addressing the question if and when to stop, as well as around global networks in MS, which was highlighted as an important issue. COVID-19 vaccination under CB-20 was also discussed but there is an agreement: patients need to be vaccinated and there is a strategy needed. Do we need to be global and can we learn from each other around the world?
Digital health comes more and more into the focus of neurologists and also patients. Patients are already digital very often, use apps or symptom trackers to stay informed and use data for better decision making.
Digital Health and MS? Does that work?
Many discussions are around digital health solutions. We can see that all is on the digital health track now, but there are a lot of issues we have to solve. Data protection, privacy, the quality of data and also can patients use own devices for symptom tracking are questions we have to discuss. Doctors and People living with MS are open minded, they have noticed the possible benefits of digital health, but it became also very clear that there are frameworks needed to organize and structure the use of digitalization in the world of MS.
We heard today a lot about biosensors and how to measure biomarkers and symptoms digitally. Prof. Tanuja Chitnis showed us the past and the future:
3rd Vaccination or Not: the Million-Dollar Question
We all know that nothing is so heavily discussed like the vaccination against the coronavirus. There are some people in doubt, scared to experience a relapse after being vaccinated, what we know since yesterday, that this will not be the case – studies from Israel state. Others have the problem that they don’t develop enough antibodies after being vaccinated under specific therapies like CB-20 or Fingolimod. But what we learned is, that vaccination needs more strategy, especially for people living with MS. It is important to discuss with the doctor how to do it and when, because there are different factors influencing the decision. In the Meet the Expert Session about “Vaccines and b-cell targeting treatments in MS” experts mentioned, that the personal situation of a person like family or employment, but also the situation with the MS can have an impact on the decision around the timing of the vaccination.
Another important question was the 3rd vaccination for people with CD20 therapy. The audience in the session was very clear. If they have the opportunity to vaccinate people, 95% would do it.
Standards in MS Care: Mission Impossible?
It is known, that not all patients receive the same care due to the disparities that exist across the globe in the healthcare systems. There are many differences from country to country. Not in every country are all therapy options available, the legal systems and standards are different. Prof. Bassem I. Yamout mentioned this and the hurdles we have to think about in his talk about the advantages and needs in standardized MS care. Since not only do people with MS have worries, but also doctors that they’d will be limited during standardized care.
Do you have a good night sleep?
Is poor sleep a symptom of MS? A study investigates exactly this question in an e-poster session. (Source: P188)
As we all know a lot of people living with MS suffer from poor sleep. Insomnia is not easy because it has an impact on the quality of life of a person. The objective of the study was to examine the relationship between sleep-related measures and 13 common MS symptoms and to find out more about the effect of sleep on health-related quality of life.
The outcome of the data analysis from 1717 people living with MS collected as a part of the Australian MS longitudinal study was that poor sleep and dysfunction group independently of common MS symptoms, although this is correlated. Bad sleep has – independently from other MS symptoms – significant deleterious effects on health-related quality of life.
Therefore, take care of your sleep hygiene like a dark and silent room, and leave your electronic devices out of your sleeping room.
How much does a person living with MS cost?
It is well-known, that living with a chronic illness is expensive. Not only for the patient who is living with the disease, but it also has a so-called economic impact on the society and the health systems. The poster P274 explains more about the economic impact and clinical profile of the secondary progressive multiple sclerosis (SPMS) patients: the DISCOVER study.
The aim of the study was to look at people living with secondary progressive ms and show the real burden of SPMS for them, as well as for the society and health systems. The objective was to estimate the total annual cost per SPMS patient.
The first insight is that cost, logically, depends on age and the EDSS score. The total annual cost per patient was 41.448,58 Euro including non-health-related resources and indirect costs. But there is a difference in the EDSS, cost ranging from 34.880,43 Euro with an EDSS from 3-3,5 to 46.218,99 Euro with an EDSS from 6.5.
The conclusion here is, that decreased health-related quality of life and increased costs in patients with a higher EDSS score highlight the importance of early implementation of effective therapies aimed to delay disease progression.
That’s a Wrap for Day 2
The conclusion of the day comes from Dr. Jeff Rodgers (UK) in the “Scientific Session 7: Epidemiology in MS: what we know, don’t know and why”. And to be honest we all know it:
Another interesting day is done and we see a big movement in the field of MS or more extensively in the world of MS. We can also see from the social networks that people living with MS are more and more interested in being involved and have a seat at the table. Especially when it comes to living with MS and how to improve their quality of life what became more important over the past couple of years. It is about information, also for patients to make the right and best decision in the right moment to enjoy a good quality life with MS, and to receive the best care they can get. And therefore, we must recognize the importance of ECTRIMS in the collection of intensive knowledge in one place.
Did you miss the world’s largest meeting dedicated to the understanding and treatment of MS? This year’s digital congress had almost 6,800 participants – but it isn’t too late for you to register for ECTRIMS 2021! Registration will be open until 4 January 2022 at 23:59 CEST. Below we’ve collected some extra summaries of the congress if you’d like to dig deeper into what was discussed during the 3-day congress.
MStranslate is an online science communication initiative from Australia, providing accurate, unbiased, easy to understand information about multiple sclerosis research and news worldwide. Their aim is to remove the complexity of the science to make it easily accessible for every member of the MS community. As every year, they have been covering ECTRIMS live on Twitter and also developed a short summary video – from the virtual Vienna where the congress was supposed to take place in live – covering the latest research outcomes presented during day 2 of the congress in different topics like:
- Stem cells
- Clinical Trials
You can watch their summary and follow their channel here:
ECTRIMS itself has also developed clickable PDF congress reports, where you can quickly navigate and read the summaries of certain sessions within the four topics: Clinical, Pathogenesis, Imaging and Non-Imaging and Biomarkers /Translational Therapy. Check out the official ECTRIMS Congress Report Day 2 – 14 October here!
CME Accreditation and Certificate of Attendance
You may earn up to 12 CME credits at ECTRIMS 2021. CME credits are automatically awarded if you have watched at least 50% of an accredited session and have completed the session evaluation. Register until 4 January 2022 to benefit from the CME credits.