Articles – Page 8

Neurology Update in Kazakhstan

Neurologists from around the world converge in Almaty.

By Aida Kondybayeva

The VI International Educational Forum: Neurology Update in Kazakhstan, took place May 17-18, 2024, at the DoubleTree by Hilton Hotel in Almaty, Kazakhstan. The forum has become an annual tradition for neurologists not only from various regions of Kazakhstan but also from Kyrgyzstan, Azerbaijan, and Uzbekistan, gathering more than 700 doctors online and in person. The forum was supported by the Asfendiyarov Kazakh National Medical University and the Central City Clinical Hospital of Almaty.

The forum featured world-renowned neurologists, including:

Paul Boon, MD, PhD, FEAN, president of the European Academy of Neurology, Belgium;
Andrei Alexandrov, MD, professor of neurology at the University of Arizona, United States;
Thanh Nguyen, MD, FRCPc, FSVIN, FAHA, president of the Society of Vascular and Interventional Neurology, United States;
Dieter Ritmacher, PhD, vice dean for research and postgraduate education, professor of neurosciences, at the Nazarbayev University School of Medicine in Astana, Kazakhstan;
Valery Feigin, MD, PhD, professor, National Institute for Stroke and Applied Neurosciences, School of Clinical Sciences at the Auckland University of Technology in New Zealand;
Celia Oreja-Guevara, MD, vice chair and senior neurologist of the department of neurology at the University Hospital San Carlos, associate professor of neurology at the Universidad Complutense, and head of the Multiple Sclerosis Center at the University Hospital San Carlos in Madrid, Spain;
Ugur Uygunoglu, MD, professor, department of neurology at Istanbul University, Cerrahpasa School of Medicine;
Natalia Khachanova, department of neurology and clinical neurophysiology at the Pirogov National Medical and Surgical Center, and neurologist of the MS department of City Clinical Hospital No. 24.

The forum also featured a number of Kazakh speakers, including:

Prof. Zhannat Idrisova, Asfendiyarov Kazakh National Medical University;
Prof. Gulnar Kabdrakhmanova, Marat Ospanov West Kazakhstan Medical University;
Ruslan Belyaev, Karaganda Medical University;
Aida Kondybayeva, MD, PhD, Asfendiyarov Kazakh National Medical University;
Karlygash Kuzhibayeva, head of the Center for Multiple Sclerosis, Autoimmune, and Orphan Diseases of the Nervous System, in Almaty;
Tatyana Kaymak, neurologist at “SanClinic” in Semey; Adil Bisembaev, Private Clinic Almaty.

Next year, the International Educational Forum: Neurology Update in Kazakhstan 2025, will be held on
April 25-26.

We look forward to seeing you in Almaty in 2025! •

Aida Kondybayeva, MD, PhD, FEAN, is head of the Scientific and Educational Center for Neurology and Applied Neuroscience at Asfendiyarov Kazakh National Medical University, and chair of the Educational Committee at Kazakhstan National Association of Neurologists “Neuroscience” and Institutional Delegate at the European Academy of Neurology from Kazakhstan.

Meet the WFN Trustee Candidates

Get to know the candidates for WFN trustee in their own words.

Six candidates have been recommended by WFN’s Nomination Committee for the upcoming election of a trustee at the virtual Council of Delegates (COD) meeting in September and have presented their statements. They are in alphabetical order:

Fernando Cendes

Valery L. Feigin

Miguel Osorno Guerra

Brian Sweeney

Barbara Tettenborn

Tissa Wijeratne

According to the WFN guidelines, further nominations can be submitted by five member societies 30 days prior to the election date. The deadline for additional nominations will be Friday, July 26, 2024.

Electronic voting will occur over three weeks starting Aug. 26, 2024.

Click the names above to read each candidate’s statements.

Candidate Statement for WFN Trustee: Fernando Cendes

Fernando Cendes

It is with great enthusiasm that I present my candidacy for the position of elected trustee at the WFN 2024 elections. I have the commitment, expertise, and background necessary. I am deeply committed to supporting the WFN’s mission and am eager to contribute my skills and experience to this important work.

I am a former Fellow and completed my PhD at the Montreal Neurological Institute and Hospital, McGill University, Canada (1991-1997), where I have an appointment as a part-time adjunct professor.

I have been a full-time neurology professor since 1997 and am currently the head of the Neurology Department at the University of Campinas, São Paulo state, Brazil. Our university hospital is a referral center for about four million people with complex neurological diseases. In addition to patient care, I teach and train undergrad and graduate students and neurology residents.

I am the principal investigator of The Brazilian Research Institute for Neuroscience and Neurotechnology (BRAINN), which is one of the Research, Innovation, and Dissemination Centers (RIDC) sponsored by FAPESP (São Paulo Research Foundation) with a 12-year operational grant. This center investigates the basic mechanisms leading to epilepsy and stroke, combining genetics, neurobiology, pharmacology, neuroimaging, computer sciences, robotics, physics, and engineering.

My service as an educator in neurology goes beyond my institution in the form of numerous lectures, teaching seminars, invited conferences worldwide, and participation in various international commissions in the International League Against Epilepsy and other societies. I also served as a member of the program subcommittee of the Global Alliance for Chronic Diseases and a delegate to the WFN for the Brazilian Academy of Neurology.

I am the newly appointed editor-in-chief of Epilepsia, and I serve on several editorial boards. My research is focused on epilepsy, neuroimaging, and clinical neuroscience, with more than 500 papers published. •

Candidate Statement for WFN Trustee: Valery L. Feigin

Valery L. Feigin

I am a professor of neurology and epidemiology and director of the National Institute for Stroke and Applied Neurosciences at Auckland University of Technology in New Zealand. I am also a Fellow of the Royal Society of New Zealand; an affiliate professor of the Department of Global Health at the University of Washington (U.S.); visiting professor of Capital Medical University (China); a member of the WHO Technical Advisory Group on NCD-Related Research and Innovation; founder and ex-officio co-chair of the GBD Stroke and Neurology Groups; editor-in-chief of Neuroepidemiology (IF 5.7) and co-chair of the Global Policy Committee of the World Stroke Organization (WSO) where I also served as a member of the Board of Directors, co-chair of the Research Committee, Guidelines Committee, Member-at-Large, and Executive Committee.

I have been working with the WFN for more than a decade as an active neurology advocate (including the Soriano Award Lecture and other public lectures and interviews), and served as a member of the Neuroepidemiology Speciality Group. Together with seven other WHO Stroke Advisory Group members for ICD-11, we justified and argued successfully for the reclassification of stroke as a neurological disease, which was endorsed for global use by the U.N. in 2020.

My 500-plus journal publications (h-index 136) have been cited more than 330,000 times, and used for evidence-based guidelines, health-care planning, priority setting, and resource allocation across the globe.

My motivation to become a trustee of the WFN is to enhance the role of the WFN in the global awareness of neurological disorders and implementation of evidence-based prevention and management strategies, workforce development, and organization of neurological services to reduce the burden of neurological disorders, with strong emphasis on low- and middle-income countries. Given my position on the Global Burden of Disease Study, I would also like to ensure that more WFN members are involved as co-authors/lead authors in the GBD Study collaboration. •

Candidate Statement for WFN Trustee: Miguel Osorno Guerra

Miguel Osorno Guerra

I am honored to be nominated as trustee of the WFN. We are in a time where innovation, collaboration, and organization must meet the diverse needs of different countries.

My name is Miguel Osorno Guerra. My professional experience in both public and private institutions in Mexico has given me insight into the significant deficiencies and challenges in neuroscience education, particularly in economically disadvantaged areas.

As secretary and later president of the Mexican Academy of Neurology (MAN), I contributed to redesigning the Journal of Neuroscience and consolidating the textbook “Elementary Neurology” for medical schools, now in its third edition. Our guiding principle was “what every doctor should know about neurology.” My organizational skills in academic events and congresses, both nationally and internationally, have significantly contributed to the dissemination of neurological knowledge.

I am also a postgraduate professor, working closely with young neurologists, encouraging them to develop research projects. This mentoring is crucial in fostering a new generation of skilled and innovative neurologists.

Our collaboration with the WFN included promoting the certification of three Mexican hospitals and participating in the WFN’s educational programs, enabling young neurologists from Latin America to enhance their skills and positively impact their communities.

My commitment to neurology education aims to improve the quality of neurological care and develop comprehensive programs for addressing neurological diseases. Through my work with the WFN, I have learned two key lessons:

Individual and isolated efforts have limited impact.

Several regions, including Latin America, need better integration with the WFN and should play a larger role in the future.

If elected, I pledge to work diligently with the WFN to achieve our shared goal of improving neurological patient care worldwide. •

Candidate Statement for WFN Trustee: Brian Sweeney

Brian Sweeney

Thank you for considering my application to be a trustee of the WFN. I have had a lifelong commitment to neurology as a clinician and educator. Having trained in medicine and neurology in Ireland and the U.K., I returned home to Ireland in 1996 as one of three neurologists in my province.

I have been a teacher all of my working life, and an administrator as the national specialty director of neurology for the Royal College of Physicians Ireland, a member of the Specialist Certificate Examination Committee of the Association of British Neurologists (ABN) and Royal College of Physicians U.K. As a member of the European Union of Medical Specialists, I have had the privilege of training and working with neurologists from all over the world – Africa, Asia, Australia/New Zealand, Europe, and North and South America.

I have been the senior neurologist in my region of Ireland, national lead for neurology for the Health Service Executive, Ireland, and national specialty director for neurology training and dean of the Irish Institute of Clinical Neuroscience.

My experience of working in and trying to develop an understaffed and underfunded neurology service in Ireland from the 1990s through the 2020s gives me insight into the challenges and advances facing neurology worldwide in the 21^st century. These include amazing diagnostic and therapeutic developments in areas like stroke, neuroinflammation, neuroradiology and genetics on one hand, with major challenges providing the staffing and other resources to allow people with neurological illness to access these innovations on the other.

My vision is for neurology to keep its clinical soul while embracing new technologies such as AI to better provide care to our patients and their families. •

Candidate Statement for WFN Trustee: Barbara Tettenborn

Barbara Tettenborn

My name is Barbara Tettenborn, I am professor of neurology in Switzerland and Germany. I received my neurological education in Berlin and Mainz, Germany; London, England; Dublin, Ireland; and Boston, United States. I am a general neurologist with special interests in epilepsy, stroke, sports neurology, and brain health. I was chair of the Department of Neurology in St. Gallen, Switzerland, from 1999–2023 and work now as head of the Center for Neurological Preventive Medicine and Sports Neurology in Zürich. I am a very active member of the European Academy of Neurology as editor-in-chief of eLearning and a WFN delegate of the Swiss Neurological Society.

I was board member of the Swiss Neurological Society for eight years, a member of the administrative board at hospital St. Gallen for four years, and treasurer of the Swiss Federation of Clinical Neuro-Societies for four years until 2022. Currently, I am president of the Swiss League against Epilepsy, president of Women in Neurology Switzerland, and president of the Scientific Board of Highly Specialized Medicine Switzerland. My research interests are epilepsy in the elderly, vascular epilepsy, vertebrobasilar ischemia, gender aspects in neurology, brain health, and sports neurology.

Neurology is not only my profession but also my first and favorite hobby. My second hobby is sport, especially triathlon and mountaineering. I like to cooperate and communicate with people and to encourage the next generation. Being recently retired from my department chair position gives me time and energy to take on new tasks. I have a lot of experience in administrative positions and political communication. It would be a great honor for me to serve as trustee of the WFN and I promise to put all my energy, enthusiasm, time, and effort into this position to help give neurology as much worldwide visibility and impact as possible. •

Candidate Statement for WFN Trustee: Tissa Wijeratne

Tissa Wijeratne

I am Prof. Tissa Wijeratne, co-chair for World Brain Day. Since the inception of World Brain Day in 2014, I have been dedicated to making brain health a priority for all. With Prof. Mohammad Wasay, I co-founded this vital initiative to promote global brain health.

Preventative brain health is essential. Nearly one in two people will experience a brain disorder in their lifetime, as highlighted in our latest GBD publication in Lancet Neurology. With the World Health Organization set to release the Intersectoral Global Action Plan (IGAP) toolkit, we have a unique opportunity to promote brain health at the grassroots level.

My extensive experience spans from rural Sri Lanka to urban Australia, providing me with a unique perspective on brain health in different settings. In Australia, I am spearheading a significant movement in preventative brain health with schools, city councils, and state governments recognizing its importance. Our progress shows that awareness and action can lead to meaningful change.

Education and advocacy are key to this effort. I have developed and promoted programs that raise awareness about brain health, providing valuable information in schools, community centers, and workplaces. I have also worked with local and state governments to create policies that support brain health initiatives, including funding for research and public health campaigns.

As a trustee at the WFN, I will bring my experience and dedication to the global stage. I am committed to supporting the mission and vision of the WFN and will work tirelessly to advance our shared goals.

I invite you to visit the WFN YouTube channel, World Neurology, and the WFN website to see how I have contributed to brain health for all since 2005. Your support and vote are crucial.

Together, we can continue to advance preventative brain health and improve lives globally. •

Brain Health Around the World

Prof. Grisold reviews the impact of the Global Burden of Disease (GBD) update, brain health, and World Brain Day.

Wolfgang Grisold

Prof. Wolfgang Grisold delivering his address on brain health at the Camera dei Deputati in Rome.

I welcome you to the new edition of World Neurology, the newsletter of the World Federation of Neurology (WFN). It contains information about the WFN, and reports and publications from members and invited individuals. World Neurology is free to download from the WFN website, and the World Neurology archive is a valuable source of information on many aspects of neurology. World Neurology is entirely sponsored by the WFN, has no other support, and is not subject to any outside influences.

The Global Burden of Disease

The release of the new version of the GBD will have a strong impact on the neurological community [Collaborators 2024]. It enlarges the spectrum of neurological conditions from 15 to 37, and includes other disease entities and disciplines, which are affected by neurological symptoms and often disability. See an overview in these infographics.

I was privileged to add a comment to the new release of the GBD (Grisold 2024).

One example of many includes neonatal birth injury, where the neurological sequelae are not an immediate effect for neurology, but are inevitable during the life course of the individual. This example and several others will expand the need for neurological structures and services, and come in a timely manner to align with the efforts of the WHO Brain Health Unit in regard to Brain Health and the Intersectoral Global Action Plan (IGAP). The IGAP and the Toolkit are advancing under the leadership of the WHO, and its overall effect on all aspects of neurology will be tremendous (Grisold et al. 2023).

By choosing the words “all aspects” of neurology, I mean that not only the scientific field of neurology and neuroscience, but all concerned, such as persons with lived experiences and health care professionals. Importantly, the public and the policymakers are also important stakeholders.

Figure 1: Prioritizing brain health: Awareness and public interest must be promoted.

Brain Health

The process of inserting “brain health” in the agenda of neurological societies, and in the further process on political agendas, is important. In addition to the European EAN efforts and the efforts of the AAN, brain health has been put on the political agendas of some countries, such as Norway, Switzerland, and recently Italy. These advances help to promote the concept of brain health, and once in a political agenda, it can be assumed that the idea and concept will be developing, surpass attention and awareness, and result in practical advances.

The implementation of brain health in the agenda of scientific societies is essential. The centerpiece is the adoption of brain health into the political agenda of a country.

After Switzerland, the most recent example of taking brain health into the political agenda is Italy, where on March 12, the Strategia Italian per la Salute del Cervello 2024-2031 was held in the Camera dei Deputati (Chamber of Deputies) in Rome, which is at the highest political level.

It was orchestrated by the Italian Society of Neurology (SIN). The importance of brain health was acknowledged, and during the meeting several Italian societies involved in neurology at all levels participated. Orazio Schillaci, the Italian minister of health, gave an inaugural speech. From the international neurology community, Prof. Paul Boon from the EAN and I (from the WFN) were invited for short speeches of introduction on the importance of brain health. Prof. Matilda Leonardi advised us on the importance of brain health for Italy and was involved in the development of the event.

My address pointed out that the WFN is actively engaged in brain health and has devoted the recent World Brain Days (WBDs) to the topic of brain health. The upcoming WBD is on brain health and prevention, following the previous WBDs on brain health, and brain health and disability. I also emphasized that within brain health, the implementation of IGAP will need increased efforts and promotion as the spectrum of persons needing neurological care is likely to increase after the release of the new GBD.

The WFN wants to congratulate SIN and Italian politics for taking up and engaging in this important matter of brain health.

Education in Neurology

Education Is one of the WFN’s core missions. We are happy to announce that the number of applications for WFN training sites, consisting of training centers and department visits, is increasing. In Africa, we currently have four training centers, and in Mexico, we have one training center.

In Africa, we have a full four-year training position in Senegal and Cape Town, and in Rabat, there is a four- year training position starting up, in addition to two neuromuscular fellowships. Since 2016, the ICNMD, a specialty group from the WFN, regularly sponsors one candidate for neuromuscular training in Africa each year from the Congress surplus. The first ICNMD virtual meeting in December was successful, and we look forward to the next ICNMD congress in Perth, Australia, which will have an exciting program concerning all aspects of neuromuscular disease.

Encouraged by our experience with the Virtual WCN 2021, the hybrid WCN in Montreal 2023, and our successful educational days with AFAN and AOAN, we will launch a two-day WFN Digital Neurology Updates (WNU) 2024 meeting. The WNU will be virtual, will take place Sept 26-27, 2024, and will consist of plenary lectures regarding the most frequent neurological conditions, followed by a series of teaching courses in the afternoon. In between the scientific parts, we will also have industry-sponsored symposia. We hope this series of update lectures will be exciting and useful, and our outreach will be as intense as it was for the WCN 2023 in Montreal.

The WNU2024 is a new initiative of the WFN.

World Brain Day 2024

The theme for World Brain Day 2024 is “Brain Health and Prevention.” It will be organized by the WBD committee and the WFN regions, and will create an attractive program to emphasize and stress the importance of brain health worldwide and selectively emphasize prevention.

Prevention is a pillar of the IGAP, and prevention in non-communicable and infectious disease is a powerful tool. This tool will help to reduce the number of neurological diseases as well as reduce the sequelae such as reduced quality of life and disability.

Wolfgang Grisold (left) and Carlos Hunt, WFN London Office, at the WFN booth at the meeting of the Austrian Society of Neurology at the Imperial Palace in Vienna.

Visit the WFN website to see the progress of development. There will be a toolbox to download material, which can be adapted and used for local promotion. We encourage all readers to use this incentive locally and celebrate WBD. We also welcome your reports from WBD celebrations, which will be potential candidates for publication in World Neurology.

Meet Us

The WFN had a booth at the meeting of the Austrian Society in Vienna and at the meeting of the American Academy of Neurology (AAN) in Denver this year.

We will have booths at the Japanese Society of Neurology in Tokyo, and at the meeting of the European Academy of Neurology (EAN) in Helsinki. If you visit any of these congresses, please visit our booth. You can also make an appointment for a meeting with our office (carlos@wfneurology.org). •

References

Collaborators, G. B. D. Nervous System Disorders. 2024. Global, regional, and national burden of disorders affecting the nervous system, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol.

Grisold, W. 2024. The expanding burden of neurological disorders. Lancet Neurol 23 (4):326-327.

Grisold, W., M. Freedman, R. Gouider, A. Guekht, S. Lewis, M. Medina, C. Meshram, G. Rouleau, R. Stark, and Neurology Trustees of the World Federation of. 2023. The Intersectoral Global Action Plan (IGAP): A unique opportunity for neurology across the globe. J Neurol Sci 449:120645.

Grisold, W., K. Karlshoej, M. Freedman, R. Gouider, A. Guekht, S. L. Lewis, M. T. Medina, C. Meshram, G. Rouleau, and R. J. Stark. 2022. Brain health as a global priority, view from WHO: Editorial from the World Federation of Neurology. J Neurol Sci 440:120337.

The Use of Telemedicine Devices and Telehealth in Neuromuscular Disease

The expansion of telemedicine use in NMDs and development of clinically relevant but easy-to-use remote monitoring systems has potential to improve patient access to expert care.

M. S. Damian, MD, FEAN, FNCS, and Prof. P. Laforet, MD, PhD

Patients with neuromuscular disorders (NMDs) have diverse and complex care requirements, typically served by highly specialized centers. However, these may be geographically remote, and the COVID-19 pandemic underlined the system’s fragility by leading to widespread suspension of diagnostic, support, and rehabilitative services.¹ Cancelled routine visits and limited outreach resulted in morbidity and even deaths. The demand for telehealth and remote care to help resolve this situation increased. This article describes the concept and current options using telemedicine in the care of people with NMDs.

Telemedicine in NMD at the Onset of the COVID-19 Pandemic

Prior to COVID-19, telemedicine was mainly used to overcome geographical challenges in thinly populated or resource-poor regions, or for monitoring patients with impaired mobility at home. Small case series suggested efficacy and economic advantages by reducing hospitalization. Zamarron et al. demonstrated the long-term feasibility of telemonitoring with video consultations plus Sp02, BP, ECG, overnight oximetry in home-ventilated patients via a residential internet gateway with alarm system and monthly outreach nurse check-ups.² Challenges included changes in the patient-carer relationship, and difficulty procuring individually adapted systems.

COVID-19 forced a hasty rethink of this position. Guidon and Amato discussed neuromuscular telemedicine consultation by phone or videolink.³ They perceived high potential for follow-up in myopathy, myasthenia gravis (MG), and polyneuropathy when stable, or for management of pain; moderate utility for new or unstable neuromuscular disorders, but low utility where there were discrepant symptom findings, for second opinions, and for primary management of unstable patients. Face-to-face clinics remained mandatory where electrodiagnostic studies and muscle and nerve biopsies were urgently needed, and where the results would change management, as in new onset amyotrophic lateral sclerosis (ALS), MG, and immune-mediated neuropathy or myopathy.

New scores and protocols may mitigate these shortcomings: Garibaldi et al. developed functional scores for myopathies and neuropathies (the Myo-FRS and N-FRS), taking reference to older disease-specific scores such as the MG-ADL for myasthenia gravis, and the ALSFR-R for amyotrophic lateral sclerosis.⁴Ricciardi et al. suggested a protocol for remote clinical testing in MG, featuring:

Counting aloud test in one breath (CAT)
Hoarseness test (voice change with high-pitched vocalization)
Head-up test (10s head flexion from supine)
Swallowing test (3oz = 90ml water swallow)⁵

Other approaches included the Veteran Affairs Neuropathy Scale, which Wilson et al. piloted in telemedicine clinics⁶ and teleswallowing, a remote swallow assessment.⁷ This work provides a toolkit to perform a detailed clinical assessment, remotely via videolink. Purely audio remote interviews are more limited. Significant technical challenges for remote clinics remain regarding the availability of monitoring devices, broadband speed, audio-visual quality, internet lagtime for timed tests (10m walk, Timed-up and Go-test), users’ technical expertise, and computer literacy. To improve this, protocols to perform a video NMD clinic have been published.^8,9 Videoconferencing platforms have been evaluated,^10,11,12 and video platforms are available in a number of commercial patient management systems. Overall, the use of telemedicine in NMDs increased during the COVID-19 pandemic, but telemonitoring was used considerably less.¹³

Telemonitoring found its first application in clinical trials to optimize remote clinical assessment, but also to improve trial recruitment and monitoring. Reliability and strong correlations between wearable physical activity monitors (sensor-based systems using activity watches or body-worn sensors, PAMs) and neuromuscular measures confirmed PAMs’ utility as outcome measures and in long term monitoring.¹⁴ Mobility data can be gathered by PAMs, or by ambient measurement systems (AMS), which passively measures movement such as ambulation speed, rise-to-stand speed, and arm-raise speed when someone is in range of a sensor.

Remote monitoring of life-supporting technology, such as home mechanical ventilation (HMV), requires regular monitoring of physiological variables (spO2, spCO2, respiratory rate) by carers supported by specialist outreach, and requires a continuous data link to the monitoring center for analysis and troubleshooting.¹⁵ It can enable remote initiation of HMV and may reduce costs, and may help predict exacerbations, allow remote interventions and adjustments.^16,17 Challenges about data security and privacy, caregiver involvement and acceptance, availability of high-speed internet, and misconceptions around time needed, remain.^18,19

Mobile Phone-Based Clinical Assessment

Wearable monitors have the disadvantage that they are expensive pieces of advanced technology, and the proliferation of devices patients must wear to allow multimodal monitoring can be intrusive. This makes them both cumbersome as well as unsuitable for low-income health environments. Therefore, exploring the potential of a ubiquitous device, such as a smartphone to provide multimodal monitoring is attractive.

Digital technologies are currently expanding rapidly, especially in the field of NMDs. They can reduce data collection burden and increase knowledge of real-life data. MG is an autoimmune neuromuscular disease characterized by very heterogeneous symptoms potentially associating ocular, bulbar, respiratory and skeletal muscles weakness and fatigability.

In current practice, visits to the physician’s office are planned every three to six months. However, since patients might experience worsening symptoms outside of visits, clinicians must often rely on patient recollection during consultations, which present a recall and subjectivity bias that can compromise the estimation of disease status. In this context, it will be clinically relevant to allow patients to self-assess their symptoms and physicians to collect and analyze digital biomarkers for a closer monitoring.

Figure 1. Remote clinical assessment enabled on a smartphone.

As an example, an ongoing study (ME&MG™, NCT: 05564936) aims to validate a digital solution that runs on patients’ smartphones. It is intended to be used as an unsupervised digital self-assessment tool for the monitoring of muscle weakness, fatigability, and disability in patients living with MG. This application contains digital active tests for the assessment of ptosis, breathing, dysarthria, upper- and lower-limb weakness, treatment follow-up, and validated e-questionnaires related to daily activities, pain, fatigue, sleep, and depression. The objectives of this study are to validate the clinical performance of the unsupervised at-home self-assessment of symptoms on the patient’s smartphone with ME&MG^™ compared to the standard in-clinic testing, including analytical performance as well as to evaluate the safety of the solution, its usability, and satisfaction. Eight sites in France and the United States will be involved in this study.20 A further study evaluating the device is ongoing in the U.S. and Canada (NCT05566964).²¹

Figure 1 demonstrates the remote clinical assessment enabled on smartphone using the ME&MG software.

Machine-Learning Models of Telemonitoring and AI-Based Analysis of Digital Biomarkers

Machine-learning (ML) and AI-based models can conceivably help establish objective, rapid, and more accurate interpretation of remote data acquired by telemedicine monitoring. Vieira et al. devised an objective measure for ALS disease severity based on voice samples and accelerometer measurements, correlated with ALS-FRS-R scores over a four-year period with an audio voice recording and Actigraph GT3X accelerometers on each limb. They also trained ML models to predict bulbar-related and limb-related ALSFRS-R scores.²²

Similar approaches were used to assess changes in an edaravone-treated patient sample. Wearables can produce an objective severity score.²³ There have been several approaches to wearables for therapy studies,²⁴ though robust validation is still awaited.

Conclusion

The expansion of telemedicine use in NMDs and development of clinically relevant but easy-to-use remote monitoring systems has potential to improve patient access to expert care, even in situations where direct face-to-face access is interrupted, as in the recent pandemic, or where scarce resources or geography prevents patient access to specialist care. Going forward, telemedicine might expand the availability of high-quality specialist care to patients in low-income societies, who hitherto have had little access. Recent developments in effective treatment can also be seen as an obligation on global medicine to explore how inequality in provision can be mitigated — telemedicine technology may advance us one step in this direction. •

M. S. Damian, MD, FEAN, FNCS, works at the Essex Cardiothoracic Centre, in Basildon, UK, and Prof. P. Laforet, MD, PhD, works in the Neurology Department, Raymond Poincaré Hospital, APHP, Garches, APHP, FHU PHENIX, Centre de référence des maladies neuromusculaires Nord Est Ile-de-France in Filnemus.