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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.4 Ricciardi 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. 

References

  1. Mauri E, Abati E, Musumeci O, et al. Estimating the impact of COVID-19 pandemic on services provided by Italian Neuromuscular Centers: an Italian Association of Myology survey of the acute phase. Acta Myol. 2020 Jun 1;39(2):57-66. doi: 10.36185/2532-1900-008.
  2. Zamarrón C, Morete E, González F. Telemedicine system for the care of patients with neuromuscular disease and chronic respiratory failure. Arch Med Sci. 2014 Oct 27;10(5):1047-51. doi: 10.5114/aoms.2014.46223.
  3. Guidon AC, Amato AA. COVID-19 and neuromuscular disorders. Neurology. 2020 Jun 2;94(22):959-969. doi: 10.1212/WNL.0000000000009566.
  4. Garibaldi M, Siciliano G, Antonini G. Telemedicine for neuromuscular disorders during the COVID-19 outbreak. J Neurol. 2021 Jan;268(1):1-4. doi: 10.1007/s00415-020-10063-7.
  5. Ricciardi D, Casagrande S, Iodice F, et al. Myasthenia gravis and telemedicine: a lesson from COVID-19 pandemic. Neurol Sci. 2021 Dec;42(12):4889-4892. doi: 10.1007/s10072-021-05566-8.
  6. Wilson AM, Ong MK, Saliba D, Jamal NI. The Veterans Affairs Neuropathy Scale: A Reliable, Remote Polyneuropathy Exam. Front Neurol. 2019 Nov 1;10:1050. doi: 10.3389/fneur.2019.01050.
  7. www.teleswallowing.com
  8. Damian MS. Neuromuscular monitoring devices – where to go next? Curr Opin Neurol. 2021 Oct 1;34(5):721-726. doi: 10.1097/WCO.0000000000000977.
  9. Al Hussona M, Maher M, Chan D, et al. The Virtual Neurologic Exam: Instructional Videos and Guidance for the COVID-19 Era. Can J Neurol Sci. 2020 Sep;47(5):598-603. doi: 10.1017/cjn.2020.96.
  10. Fortunato F, Bianchi F, Ricci G, et al. Digital health and Clinical Patient Management System (CPMS) platform utility for data sharing of neuromuscular patients: the Italian EURO-NMD experience. Orphanet J Rare Dis. 2023 Jul 21;18(1):196. doi: 10.1186/s13023-023-02776-5.
  11. Reyaz A, Agarwal A, Padma Srivastava MV, et al. Impact of Tele-Neuromuscular Clinic on the Accessibility of Care for Patients with Inherited Neuromuscular Disorders during COVID-19 Pandemic in India. Ann Indian Acad Neurol. 2022 May-Jun;25(3):505-507. doi: 10.4103/aian.aian_565_21.
  12. Amin R, Pizzuti R, Buchanan F, Rose L. A virtual care innovation for home mechanical ventilation. CMAJ. 2021 Apr 26;193(17):E607-E611. doi: 10.1503/cmaj.202584.
  13. El-Hassar L, Amara A, Sanson B, et al. Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey. J Neuromuscul Dis. 2023;10(2):173-184. doi: 10.3233/JND-221525.
  14. Rockette-Wagner B, Aggarwal R. A Review of The Evidence for the Utility of Physical Activity Monitor Use in Patients with Idiopathic Inflammatory Myopathies. Rheumatology (Oxford). 2024 Jan 18:keae004. doi: 10.1093/rheumatology/keae004.
  15. Angelucci A, Aliverti A. Telemonitoring systems for respiratory patients: technological aspects. Pulmonology. 2020 Jul-Aug;26(4):221-232
  16. Hazenberg A, Kerstjens HA, Prins SC, et al. Initiation of home mechanical ventilation at home: a randomized controlled trial of efficacy, feasibility and costs. Respir Med. 2014 Sep;108(9):1387-95. doi: 10.1016/j.rmed.2014.07.008.
  17. van den Biggelaar RJM, Hazenberg A, Cobben NAM, Gaytant MA, Vermeulen KM, Wijkstra PJ. A Randomized Trial of Initiation of Chronic Noninvasive Mechanical Ventilation at Home vs In-Hospital in Patients With Neuromuscular Disease and Thoracic Cage Disorder: The Dutch Homerun Trial. Chest. 2020 Dec;158(6):2493-2501. doi: 10.1016/j.chest.2020.07.007.
  18. van den Biggelaar R, Hazenberg A, Duiverman ML. The role of telemonitoring in patients on home mechanical ventilation. Eur Respir Rev. 2023 Apr 5;32(168):220207. doi: 10.1183/16000617.0207-2022.
  19. Ambrosino N, Vitacca M, Dreher M, et al. Tele-monitoring of ventilator-dependent patients: a European Respiratory Society Statement. Eur Respir J. 2016 Sep;48(3):648-63. doi: 10.1183/13993003.01721-2015.
  20. The ME&MG Digital Solution for Autonomous Assessment of Myasthenia Gravis. Online: https://clinicaltrials.gov/study/NCT05564936
  21. Descriptive Analysis of Real-world Data Collected With the ME&MG open Mobile Application Developed for Myasthenia Gravis Patients. Online: https://clinicaltrials.gov/study/NCT05566964
  22. Vieira FG, Venugopalan S, Premasiri AS, et al. A machine-learning based objective measure for ALS disease severity. NPJ Digit Med. 2022 Apr 8;5(1):45. doi: 10.1038/s41746-022-00588-8.
  23. Gupta AS, Patel S, Premasiri A, Vieira F. At-home wearables and machine learning sensitively capture disease progression in amyotrophic lateral sclerosis. Nat Commun. 2023 Aug 21;14(1):5080. doi: 10.1038/s41467-023-40917-3.
  24. Poleur M, Markati T, Servais L. The use of digital outcome measures in clinical trials in rare neurological diseases: a systematic literature review. Orphanet J Rare Dis. 2023 Aug 2;18(1):224. doi: 10.1186/s13023-023-02813-3.

26th World Congress of Neurology Plenary Speakers

Plenary speakers shared their latest research on topics such as diabetic neuropathies, Parkinson’s disease, ALS, and global health care equity.

The 26th World Congress of Neurology was held Oct. 15-19 in Montreal. This combined in-person and virtual meeting was attended by over 3,500 neurologists from 129 countries. The highlight of the meeting was a series of plenary lectures given by world experts in a variety of subjects, ranging from a rare disease to neuroepidemiology. They brought their insights into a plethora of important neurological problems, from rare diseases to the World Health Organization’s plan to address neurological diseases across the globe. Summaries and salient messages are presented below.  All of the subjects covered important issues that concern neurologists and that can potentially affect billions of people around the world.

–Guy Rouleau, vice president of the WFN

Hosted in Montreal, the 2023 World Congress of Neurology united experts to address key neurology challenges. Plenary speakers shared their latest research on topics such as diabetic neuropathies, Parkinson’s disease, ALS, and global health care equity.

Dr. Tarun Dua from the World Health Organization emphasized the urgency in tackling neurological disorders, shaping a collaborative atmosphere.

The congress served as a hub for diverse perspectives and initiatives. Explore the discussions in each plenary lecture by reading the full press releases linked with each lecture.

The Global Importance of Diabetic Neuropathies

Eva Feldman, MD, PhD, James W. Albers Distinguished University Professor, and Russell N. DeJong, Professor of Neurology, University of Michigan

Type 2 diabetes has reached epidemic proportions, and complications like ulcers and amputations not only impact quality of life but also strain health care systems worldwide. During her plenary lecture, Dr. Eva Feldman cast a light on diabetic peripheral neuropathy (DPN), a major complication of diabetes and a leading cause of global disability. Discover the latest insights into the global burden of DPN and learn about the urgent need for new treatment approaches, education, and lifestyle changes to combat this worldwide challenge.

Read the full press release.

The WHO, IGAP, and Brain Health

Tarun Dua, MD, Head, Brain Health Unit, World Health Organization, Switzerland

Neurological conditions are the second-leading cause of death and the leading cause of disability worldwide. The World Health Organization’s new Intersectoral Global Action Plan provides a critical blueprint for combating neurological conditions and calls for urgent action from governments and health care organizations around the world. Dr. Tarun Dua discussed this landmark coordinated effort to tackle the challenges posed by neurological disorders, including the five key objectives for addressing these conditions worldwide and 10 global targets to be achieved by 2031.

Read the full press release.

The Epidemiology and Burden of Neurological Disorders

Valery Feigin, MD, PhD, Professor of Neurology and Epidemiology, National Institute for Stroke and Applied Neurosciences, Auckland University of Technology, New Zealand

Low- and middle-income countries currently experience a disproportionate degree of the global burden of neurological disorders. Dr. Valery Feigin revealed groundbreaking findings from the latest Global Burden of Disease (GBD) study. Learn about the top 10 neurological conditions causing 90% of global disability and see how this data can aid neurologists and global health organizations in reducing health care disparities in low- and middle-income countries.

Read the full press release.

Status of Disease-Modifying Therapy in Parkinson’s Disease

Anthony Lang, MD, Professor of Neurology, Jack Clark Chair for Parkinson’s Disease Research and Lily Safra Chair in Movement Disorders, University of Toronto, Canada

Parkinson’s disease is one of the fastest-growing neurological diseases on the planet. But what if researchers could detect signs of the disease years before symptoms start to show? During his plenary lecture, Dr. Anthony Lang presented a groundbreaking new model for identifying and studying Parkinson’s disease. This approach will help researchers investigate biological aspects of the disease that may be detectable many years before symptoms begin to show.

Read the full press release.

Clinical Trial Progress in ALS

Merit Cudkowicz, MD, Chair, Massachusetts General Hospital Department of Neurology; Director, Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital; Julieanne Dorn Professor of Neurology, Harvard Medical School

One of the central challenges of amyotrophic lateral sclerosis (ALS) research is finding ways to slow the progression of this relentlessly degenerative disease. Several late-stage clinical trials in ALS have had positive results. In addition, recently, two promising experimental drugs were advanced to phase 3 clinical trials as part of the innovative HEALEY ALS Platform Trial. Dr. Merit Cudkowicz’s lecture highlighted the drugs currently being tested in the HEALEY ALS Platform Trial as well as several other recently approved ALS medications, the promise of gene therapies, and a proposed new biomarker that is aiding in the development of treatments and research.

Read the full press release.

The Rett Syndrome: From Clinics to Genetics

Huda Zoghbi, MD, Professor of Molecular and Human Genetics, Baylor College of Medicine

Rett Syndrome is a delayed-onset childhood disorder that causes a broad range of severe neurological disabilities, including loss of the ability to speak and socialize, and the development of tremors, ataxia, seizures, autonomic dysfunction, and stereotypic hand-wringing movements. In her lecture, Dr. Huda Zoghbi, MD, discussed what her lab has learned about Rett pathogenesis and the significance of MeCP2 protein levels in maintaining healthy brain function. She outlined how an insufficient amount of this protein contributes to Rett syndrome, while an excess (resulting from gene duplication) leads to another severe neurological condition.

Read the full press release.

Transformations in the Treatment of Stroke

Liping Liu, MD, PhD, Director, Neurointensive Care Unit (NICU), Neurology and Stroke Center, Beijing Tiantan Hospital, Capital Medical University, China

Stroke is a leading cause of disability worldwide. However, giving certain treatments—called reperfusion therapies—soon after the start of a stroke can dramatically improve patient outcomes and minimize long-term brain damage. Dr. Liping Liu highlighted recent advancements in stroke treatment and strategies for addressing the global burden of stroke. She presented recent research on the effectiveness of reperfusion therapies for ischemic stroke and advocated for increasing awareness and training in these types of therapies for the global neurology community.

Read the full press release.

President of African Academy of Neurology Calls for Urgent, Unified Action to Address Lack of Trained Neurologists

Dr. Augustina Charway-Felli, President of the African Academy of Neurology

Africa is faced with critical shortages of neurologists and health care funding, leading to some of the world’s highest rates of disability from neurological disorders. Dr. Augustina Charway-Felli presented a strategic plan at the WCN. The proposal underscores regional training to bolster Africa’s neurologist count and prioritizes educating primary care providers. Dr. Charway-Felli advocated for a unified approach focusing on training, reducing brain drain, increasing specialized neurologists, and public education. Interregional collaboration and WFN accredited training centers in Dakar, Senegal; Rabat, Morocco; Cairo, Egypt; and Cape Town, South Africa, are vital components. The plan aims to alleviate the severe neurologist shortage and improve neurological care accessibility in Africa.

Read the full press release.

Kathy Oliver Champions Global Action for Patient Organizations at the 26th World Congress of Neurology

Kathy Oliver, chair of the International Brain Tumor Alliance

Patient engagement is gaining prominence in healthcare with Kathy Oliver championing this movement. Oliver emphasized the pivotal role of patient organizations in shaping clinical trials, drug development, health care policy, and regulatory issues. Patient engagement enhances research quality and resource allocation by aligning with patients’ priorities. Oliver highlighted five priorities for effective patient collaboration, stressing clear expectations, focusing on patients’ perspectives, promoting mutual learning, fostering effective collaboration, and ensuring timely involvement. Central to this approach is the principle “nothing about us, without us,” advocating for patient centrality in health care decisions.

Read the full press release.

Neurologist Reveals the Hidden Neurological Consequences of Historic Pandemics

Hadi Manji, MD, Consultant Neurologist and Honorary Associate Professor at the National Hospital for Neurology, United Kingdom

Although the height of the COVID-19 pandemic may be behind us, millions of people continue to experience disabling complications like long COVID—and researchers still don’t understand the full scope of COVID-19’s impact on the brain. During the congress, Dr. Hadi Manji shed light on the neurological complications of COVID-19 by exploring similar long-term complications of global pandemics, including the Spanish flu pandemic of 1918, HIV/AIDS, and Zika virus. This enlightening lecture explored what past pandemics can teach us about diagnosing and treating current post-infection complications like HIV-associated neurocognitive disorder (HAND) and long COVID, which impact millions of people worldwide.

Read the full press release. •

Leveraging Technology in Resource Poor Settings: Not an Improbable Dream

Identifying problem statements, technology can help provide simple solutions that go a long way in bridging lapses in treatment.

Dr. Bindu Menon and Dr. Medha Menon

By Dr. Bindu Menon and Dr. Medha Menon

Epilepsy, when put simply, is a brain disorder that causes recurrent seizures. This disease can manifest as the typical jerky movements of limbs as well as only sensory complaints recorded as electrical disturbances on electroencephalography (EEG). This wide variation of disease manifestation makes it a condition one must be wary of and have a high index of suspicion. The number of cases of epilepsy touches 50 million globally, 80% of whom reside in middle- to low-income countries like India1.

It is important to realize why one must be wary of a disease that’s prevalent in such high numbers. Surely, its ubiquity implies the presence of a well-structured management plan? However, the enormity of the problem can become the hamartia of the disease.

One must first realize that more than three-quarters of the disease burden resides in regions that are struggling to bridge the treatment gap. In a world where everything is run by money, the catastrophic expenditure on health burdens every family in the lesser privileged sections of economy. This expenditure encompasses costs of medication, hospitalization, and continuation of care. The onus to balance livelihood and health falls on the patient, and when this burden becomes too much, they tend to stop being compliant to treatment — an ignition to the vicious cycle of expense and hospitalization.

Another stark problem one sees in the lower income countries is the stigma attached to the disease. The typical flailing of limbs often described as demonic possession in archaic times still brings out a level of unnecessary discomfort in onlookers of a seizure episode. These thoughts are easily curbed through a proper understanding of the disease. In a way, the stigma that hurdles a patient’s progress when vanquished empowers the community to provide moral support to the patient and their family.

The root of these problems is often lack of knowledge of the disease and so it is only natural that the solution is proper education and awareness. In this digitally advanced world, we must keep up and take advantage of the speed and extent of the reach of technology. Where once it was physically difficult to reach remote areas, in this day and age the internet and satellite connections help us reach the same areas remotely.

One such advancement is the Epilepsy Help App launched by our Foundation in India2 April 2016 — a free mobile app that can be downloaded on Android phones. It is available in English as well as vernacular languages and keeps record of a patient’s personal details, appointments, and reports.

When a patient presents to the emergency department with a seizure, it is of utmost importance that the doctor knows which medication and dosage the patient is on. The app shows the record of patient’s medications as well as has alarms for taking them, since a single missed medication can prove to be devastating to their life. Besides this, the patient can maintain a seizure diary within the app. The app has facilities for a bystander to take a video of a patient having a seizure attack, which proves to be of great value to a doctor to discern a diagnosis. On the whole, this app helps keeps track of a patient’s disease for their as well as the doctor’s benefit.

Among the patient stories we have permission to share was of one college student on three anti-seizure medicines. He often received different injections in the emergency department and was prescribed different cocktails of medicines due to his lack of record keeping. But with this app, he is documenting his prescriptions and scans and has currently been seizure free for eight months. The most useful feature for him, “For me, the drug reminder alarm is a huge help, and it makes sure I have not missed medications like I used to before.”

Another story was about the usefulness of keeping a video diary. An office worker who stayed in the dorms away from his family suffered from jerky motions, which were misdiagnosed as a seizure attack. Hence, he was put on wrong medication. But record-keeping of videos at several instances — once in the dorms, another at his home, and one while he was outside with friends who all knew of the app in his phone, helped in reaching the right diagnosis of a nonepileptic attack disorder upon physician review.

Another application is a Tele Awareness3 initiative, which is a toll-free number that can be called to receive information about epilepsy. It is accessible to all, and this number when disseminated in large numbers when in medical camps, helps ensure that the general population is made aware of the disease, its risk factors, management, and the need for treatment compliance. Furthermore, it is in these medical camps that they are made aware that the societal stigma about the disease needs to be abolished.

Stroke is another disabling disease that affects everybody differently. The life of a patient and their family changes drastically after a stroke which makes rehabilitation a crucial part of the spectrum of stroke care. Rehabilitation is all about getting back to a normal life and living a life as independently as possible. A venture in this direction is the Stroke Help app. This app has various physiotherapy exercises which are specific to the stroke deficits. The exercises are for passive and active limb exercises, handgrip and dexterity, positioning of the body, turning and mobilization, visual training, and balance exercises. This app has been extremely helpful for stroke patients especially during COVID, when medical services were not as accessible, but we did not want to falter in patient care. It is still being used4.

A novel project in the country is the Neurology on Wheels program where treatment-inaccessible areas are approached in a bus equipped with medical facilities. It follows the motto, “We Reach, We Teach, We Treat” Upon reaching the remote areas, there is an awareness camp followed by a medical camp with distribution of free medicines. An extension of this is We Care, wherein patients with epilepsy are followed up remotely. This is done with the help of the village head who gathers the patients in one place and sets up a telecommunication link to the doctor who can then follow up with each patient. This ensures compliance and treatment satisfaction especially in a resource-poor setting by curbing expenditure from both ends.

Technology doesn’t need to be used in grandiose gestures to be of use to the people. Identifying problem statements and finding simple solutions goes a long way in bridging lapses in treatment. A resource-poor country does not imply that the whole nation is lacking. Technologically linking the better-off areas to help the lesser privileged sections doesn’t have to be a lofty feat. Once the key to unraveling the tangled ball of problems is in sight, it is only a matter of like-minded individuals putting smart and economic solutions to improve health care. •

Dr. Bindu Menon is professor and head of the department at Apollo Speciality Hospitals in Nellore, India, secretary general of the Indian Epilepsy Association, and president of Dr. Bindu Menon Foundation. Dr. Medha Menon is resident in internal medicine at the Kasturba Hospital Manipal, India, and treasurer of the Dr. Bindu Menon Foundation.

References:

  1. https://www.who.int/news-room/fact-sheets/detail/epilepsy#:~:text=Key%20facts,%2D%20and%20middle%2Dincome%20countries
  2. http://drbindumenon.com/epilepsyapp/
  3. http://drbindumenon.com/teleawareness/
  4. https://play.google.com/store/apps/details?id=appinventor.ai_bindumenon2013.StrokeHelp

The Global Neuro Research Coalition: A Call for Collaboration

Join the collective network of neurologists, neuroscientists, and allied specialty professionals to create a research environment that tackled problems of global neurology.

Orla Hilton

By Dr. Orla Hilton

Founded in 2020, the Global Neuro Research Coalition works to advance research in global brain health and improve patient care through an ever-expanding international network of clinicians, allied health care workers, scientists, and policymakers who are passionate about brain health.

COVID-19 was the initial catalyst for the founding of the then-called Global COVID-19 Neuro Research Coalition, as the global neurological community began to be confronted with the largely unknown effects of SARS-CoV-2 on the nervous system and the inequalities in the management of patients who developed neurological complications of the virus. We have now expanded our focus and established as the Global Neuro Research Coalition, comprising over 120 members from 38 countries, with skills and translational expertise spanning from basic neuroscience research to clinical neurology and guidelines/policy decision-making.

Our coalition invites and welcomes new members of the global neurological community to join our collective network of neurologists, neuroscientists, and allied specialty professionals to create an inclusive research environment that can better understand and tackle the ever-evolving problems the field of global neurology faces.

Our mission statement: Advancing brain health research through interdisciplinary global collaboration.

The five pillars of the World Health Organization’s (WHO) Intersectoral Global Action Plan (IGAP) on Epilepsy and Other Neurological Disorders lie at the heart of our mission, as we work to harmonize networks and strategies for future neurological research and to develop clinical guidance by establishing open lines of communication between international colleagues and institutions, especially in low- and middle-income countries (LMICs).

The building and strengthening of such a coalition remain vital as we investigate and understand the long-term neurological and cognitive sequelae of COVID-19, and look forward to pursuing the translation of current and future neurological research into policies that promote a ‘one health’ approach.

To date, the coalition has published over 10 papers together. A key example of the power of our consortium to perform global neurological research is the International Inter-observer Variability Study by Tamborska et al. (Journal of the Neurological Sciences, 2023), undertaken in collaboration with the World Federation of Neurology. This brought together 146 researchers and clinicians from 45 countries, who looked at the diagnostic accuracy for the acute neurological complications of COVID-19 and demonstrated the need for training in the global reporting of neurological syndromes. Other key works of our coalition have addressed the neurological manifestations of acute COVID-19 infections. Examples include the Consensus Clinical Guidance for Diagnosis and Management of Adult COVID-19 Encephalopathy Patients’ by Michael et al. (The Journal of Neuropsychiatry and Clinical Neurosciences, 2023), in addition Neurological Events Reported after COVID-19 Vaccines by Frontera et al. (Annals of Neurology, 2022), and Evaluation and Treatment Approaches for Neurological Post-Acute Sequelae of COVID-19 by Frontera et al. (Journal of the Neurological Sciences, 2023).

In addition, our coalition has also led to the creation of the Global Brain Health Clinical Exchange Platform in collaboration with the WHO. This platform hosts monthly free, online sessions, engaging hundreds of participants from over 50 countries to hear the latest from world leaders in neurology and exchange experience on the current challenges and future directions of a wide spectrum of neurological research. Topics have included the neuroepidemiology of emerging pathogens, management of acute neurological presentations, patient-and-public engagement and long-term care, and the delivery of improvements in health care systems.

The coalition is grateful for the ongoing support of the World Federation of Neurology and our other partner institutions. We endeavor to continue to collaborate and partner in an interdisciplinary way with other medical and allied specialties, especially in LMICs which often carry the heaviest burden of neurological disease. We welcome all new members. If you are interested in becoming part of the coalition, please visit https://www.liverpool.ac.uk/neurosciences-research-unit/knowledge-exchange/global-neuro-research-coalition/ and/or send an email to covidcns@liverpool.ac.uk. •

Dr. Orla Hilton (UK) is an academic foundation doctor in infectious diseases and clinical researcher for the national COVID-19 Clinical Neuroscience Study based at Infection Neuroscience Lab in Liverpool, UK.

WFN Reinforces Its Commitment to Advancing Global Neurology Education

Report of a press conference held at the World Congress of Neurology, Montreal, October 2023

On behalf of the WFN trustees, assisted by the WFN press support organization, Yakkety Yak.*

Key teaching initiatives bridge gaps in neurological care to promote brain health worldwide.

Neurological disorders are currently the second highest cause of death and the leading cause of disability worldwide. The new Global Burden of Disease (GBD) study shows that the number of people living with brain disease is expected to double by 2050.

One of the central challenges of addressing the growing burden of neurological diseases is the lack of available neurology care in under-resourced parts of the world. The World Federation of Neurology (WFN) is committed to finding new and innovative ways to educate and train an increasingly critical global neurology workforce to close this gap.

The World Health Organization (WHO) recommends one to five neurologists per every 100,000 people, but many low- and middle-income countries fall well below this number. In fact, the contrast in available neurologists between low-income and high-income countries is so stark that some of the lowest-income nations have 70 times fewer neurologists than countries like the U.S. and Canada.

“It’s impossible to develop appropriate care without education. It’s impossible to promote research without education,” said Dr. Alla Guekht, elected trustee of the World Federation of Neurology.

WFN will continue working with its regional neurological associations and member states to increase the availability of neurological care worldwide.

WFN Training Centers

WFN furthers its mission of fostering quality neurology and brain health worldwide by promoting global neurological education and training, with an emphasis on under-resourced parts of the world. WFN celebrates 10 years of WFN Training Centers, which facilitate training and knowledge exchange as well as visiting fellowships in global regions that have severe shortages of neurologists. WFN currently has training centers in Africa (Dakar, Senegal; Cairo, Egypt; Rabat, Morocco; and Cape Town, South Africa) and Mexico.

“The idea is not to go there and teach, but to empower regions to train their own neurologists,” said Dr. Wolfgang Grisold, president of the World Federation of Neurology. “This has been extremely productive, and while it does not fill the gap that is needed for neurologists in these and other regions, it does create important incentives.”

Future education efforts need to extend beyond neurology specialists to include training in neurological disorders and brain health at all levels of the health care system.

“Increasing the number of neurologists alone is not enough,” said Dr. Augustina Charway-Felli, president of the African Academy of Neurology. “We need to increase neurological awareness across health care providers of all levels — primary health care providers, general practitioners, specialists that are not neurologists and allied health care professionals.”

Global Partnerships and Visiting Neurologist Programs

WFN facilitates programs where residents or young neurologists visit hospitals in other countries for four to six weeks to gain exposure to different health systems and bring back their knowledge and experience to their home countries.

These initiatives are enabled by partnerships between the WFN and national neurological societies. They aim to enhance the exposure of young neurologists to their respective national neurological frameworks within a global context. This offers them the opportunity to connect with new peers and promote future collaborations among countries, universities, hospitals, and departments.

“We are very grateful for the many countries that receive either residents or young neurologists for short department visits,” said Dr. Grisold. “This has been very effective because people get exposed to a different health system for four to six weeks and come back with new ideas they can implement in their own departments and health care systems.”

Increasing Virtual Training

The COVID-19 pandemic required many health organizations to adapt to virtual modes of communication to expand access to training and education previously limited to in-person gatherings. WFN plans to continue utilizing virtual platforms to make critical neurology training and education available on a global scale.

“Increased virtual meetings empower us to be more relevant and efficient in all the different parts of the world,” said Dr. Guy Rouleau, president of the XXVI World Congress of Neurology. “Virtual education reduces costs for everyone —  both participants and the ones who generate the teaching — and we are also better able to tailor education and training to local needs.”

Ongoing education efforts must not only be more widely accessible to the global neurology community but also tailored to the specific needs of each country’s health systems and population.

WHO’s Intersectoral Global Action Plan (IGAP)

WHO’s Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders is a comprehensive framework aimed at reducing the global burden of neurological diseases and bolstering health care systems worldwide with the necessary resources and expertise. One of its goals is to increase training in neurological issues for the primary health care workforce and caregivers.

Dr. Tarun Dua, head of the World Health Organization’s Brain Health Unit, emphasized the need for a multifaceted approach to this complex issue beyond simply increasing the number of neurologists.

“The way we are building up our neurological workforce with the current education programs — even if we double the capacity, we are not going to bridge that gap in the nine years needed to meet the goals of the action plan,” said Dr. Dua. “We need to have a paradigm shift in our thinking.”

This paradigm shift must include not just new and expanded ways of training neurologists, but also reframing how we think of brain health as a human rights and global public health issue.

Spreading Education Through the World Congress of Neurology

The 26th World Congress of Neurology (WCN 2023) was held Oct. 15-19 in Montreal, Canada. WCN 2023 was the first in-person conference since the COVID-19 pandemic and brought together over 2,300 face-to-face and 1,300 virtual participants from 132 countries, including neurologists and advocates from the six global regions represented by our 124 WFN Member Societies. WFN also welcomed a new member society from the Republic of Chad.

“The resounding success of this year’s World Congress of Neurology is a testament to the unwavering dedication of the global neurology community,” said Dr. Grisold. “We’ve not only rejuvenated our connections but also extended our reach, embracing a new member society from the Republic of Chad. Together, we’ve paved the way for a brighter future in neurology.”

At WCN 2023, Dr. Steven L. Lewis, WFN secretary general and Congress committee chair, announced the locations for the next two biennial conferences:

  • 27th World Congress of Neurology, 2025, Seoul, South Korea
  • 28th World Congress of Neurology, 2027, Cape Town, South Africa

From 2024 onward, WFN will establish educational interim meetings called “WFN Digital Neurological Updates (WNU),” devoted to updates in neurology. These virtual meetings will be held in years between congresses and are intended to fill the gap between the bi-annual conferences.

“We will continue to find fresh ways to present the newest discoveries and the latest clinical information to attendees from around the globe,” said Dr. Lewis. “Our goal is to create the most accessible platform so that neurologists and other health care providers can bring this information back to their regions, to their hospitals and to their individual patients, to benefit from the latest developments in the field of neurology and to provide the best neurologic care to their patients wherever they may be.”

Looking toward 2024 and beyond, WFN is excited to find new and even more effective ways to support training for the global neurology community, foster regional exchange of knowledge and education, and prioritize brain health as a human right and a global public health issue. •

* This article was composed by our press consulting agency Yakkety Yak, Inc., on behalf of the WFN. It is based on interviews and communications and contains no industry influence or bias.

WCN 2023 and WFN Activities

Here’s a preview of the upcoming World Congress of Neurology (WCN) 2023 in Montreal as well as an update on some WFN activities.

By Wolfgang Grisold

Wolfgang Grisold

The preparation for a WCN starts four years before the congress, when a new site is elected by the Council of Delegates (COD). The WFN is aware of how much effort goes into these site applications and bidding procedures and is thankful to all societies who make this effort. Yet, only one site is selected based on the needs of the WFN.

The WCN is also the site for the COD meeting, which is the highest decisive WFN body. The delegates this year will decide on two positions within the trustees: treasurer and one trustee. The present term of the current office holders ends and cannot be prolonged. I want to thank Richard Stark, WFN treasurer, and Morris Freedman, elected trustee, for their efforts and contributions to the WFN.

During the Montreal meeting, the congress site for 2027 will be selected. This congress meeting will be held in the African region.

All voting will be electronic, and information on the dates and voting procedures will be on the website.

As we have experienced in recent years, the face-to-face meetings are important despite technology, and the WCN is a unique platform for taking all parts of neurology on board, as well as providing the platform for international participants and personal exchange, which are important elements in communication. Important ideas and developments are often generated in personal contact “over a cup of coffee.” Using this idea, we have generated a few “coffee meetings” at the WCN. These will be public coffee spaces, where important topics such as the IGAP and WFN education will be presented by experts, and participants can ask questions or make comments. We will also have the three past presidents and myself available for thoughts on the WFN in regard to the past, present, and future during one of these sessions. The coffee meetings will be arranged in the exhibition area and will be open. No registration will be necessary. We hope you will be able to participate in this new initiative.

We are introducing other elements to WCN 2023, including debates and meet the lecturers of plenary sessions. We will continue the AAN/WFN advocacy course as well as feature two sessions created by our group of young neurologists. We are grateful for initiatives of our Canadian hosts, which will include a painting session, Yoga session, and a WCN run.

Image during WHO Rehabilitation Meeting. “Disability is part of human diversity” from the WHO meeting (from Third Global Rehabilitation Meeting.)

The scientific program is of high quality and the result of a long preparation time of the Scientific Committee, which was chaired by Mathew Kiernan and Alex Henri-Bhargava, and the Teaching Course Committee, which was chaired by Riadh Gouider and Morris Freedman. We are honored that the WHO will participate in a plenary lecture and in a joint session, which will give information and transparency on the important cooperation with the WHO.

We are looking forward to the plenary lectures and scientific sessions and to the hopefully lively exchange at the guided poster tours. Needless to say, the educational program and teaching courses will be an excellent opportunity to update and receive important information from an excellent faculty.

The social program will consist of the welcome reception, a president’s reception for delegates and committee members, a ticketed networking event, and a final reception by the host society. On Oct. 17, we will host a reception 4:15 to 5:30 p.m. for young neurologists (Young Neurologist Networking Event) at the congress venue. Montreal is a vibrant city and will provide many additional opportunities for networking.

Because of all of our experiences from COVID-19, we have all become much more comfortable with electronic media, and we will offer the WCN virtually. This has at least two reasons: first, to enable persons from low-income countries to participate (also with electronic posters), and second, to offer the possibility of participation for countries that cannot obtain visas, or where the burden of travel and congress costs are too high. We are aware of visa issues and have added a list to the WCN website where we will try to help.

We have the traditional congress bursaries, which lift a significant part of the costs, and we will give a number of free virtual congress participations to a number of low-income countries, selected areas of crisis, and to students.

One of the core activities of the WFN is to provide education in all parts of the world, and we are glad that our concept of the educational days, one for Africa, one for Asia, and a joint event with IHS /GPAC for Africa are well-attended, and we can keep the principle of permanent education and information at a constant level, despite two years between the World Congresses.

As the permanent stream of information and development in neurology increases, the need for additional worldwide education will grow, and the WFN will have to make efforts to fill this gap.

It is important to continue WFN educational projects, and we want to thank all hosting participants in the WFN Department Visit programs, as well as all WFN Training Centers for their ongoing work. The concept of the Training Centers started in Rabat in 2013, and we thank this location and its chair, Prof. El Alaoui for the initiating spark. Rabat was followed by Cairo, Senegal, Mexico, and Cape Town. We will take this opportunity to thank the chairs of the WFN Training Centers in a special session at the WCN in Montreal. The activities to permanently sustain the Training Centers is almost entirely carried out by the WFN, and is a long-term commitment based on the financial capacity of the WFN.

We realize that all of this is not enough for global education, but we add piece by piece, such as hopefully a Training Center in Asia devoted to education for low-income Asian countries.

We are also glad on the support for the department visit program, and India will join offering department visits for Asian low-income countries. The overarching theme is “to empower regions” and help to create centers of excellence that can train and promote neurology at the WFN level.

We are also convinced that science, knowledge, and skills in neurology are not enough, and we will need to invest in advocacy skills and leadership. The future of neurology will depend on engaged leaders in neurology. In addition to our permanent AAN-WFN advocacy course at the WCN, the WFN is aware of the need of more comprehensive training.

The WFN had a successful World Brain Day (WBD), themed “Brain Health and Disability,” with 470 registrants at the webinar and several reports from successful local WBD days on the website. We think that the topic “Brain Health and Disability” has initiated worldwide interest in the important aspect of disability. (J Neurol Sci 2023 Aug 15;451:120720). As we know from the Global Burden of Disease, neurological diseases are the main cause for disability, and the WFN needs to make efforts to keep the interest growing, as many of our patients are affected and often permanently and chronically. The increased access to rehabilitation and care, and disability as a right and not depending on charity, are important. Further engagement following disability in neurology will be needed.

We also want to make readers aware of the WHO rehabilitation meeting and formation of the WHO rehabilitation alliance and the package of interventions for rehabilitation: Module 3: Neurological Conditions, which can be downloaded.

Please continue to follow our website and social media for ongoing events, and if you or your society want to report on activities or an important event, do not hesitate to submit an article to World Neurology. The editors Profs. Lewis and Struhal will carefully look at it for possible publication.

Looking forward to meeting you in Montreal, either in person or virtually, serving the same theme: “Promote Neurology Worldwide!” •

New Workplaces, New Opportunities to Mitigate Neurological Disability

Workplace disease-specific education and management programs to increase awareness, diagnosis, management, and productivity.

By Dr. Olivia Begasse de Dhaem

Olivia Begasse de Dhaem

Mitigating the impact of the disability related to neurological diseases goes beyond medical management and rehabilitation. Workplace accommodations and workplace disease education and management programs must be included in the continued efforts of the 2023 World Brain Day campaign.

As stated by Prof. David Dodick on World Brain Day 2023, disability is associated with developing chronic conditions; earlier mortality; disparities in terms of access to care, education, job; stigma; and poverty. Supporting people with neurological disorders in the workplace is crucial to mitigate the downstream impact of disability. Neurological disability interferes with occupational potential and earning, which in turn can negatively impact mental health and access to medical care and worsen the level of disease state and its related disability. Being in the workforce contributes to general and mental health.

Let’s take the example of migraine, the second leading cause of disability in the world according to the Global Burden of Diseases. Migraine is the second cause of presenteeism (being present at work but not as productive as usual due to the symptoms of a disease) in the United States, estimated to account for 16% of total workplace presenteeism and to cost $240 billion (USD) annually. Although the migraine-related productivity loss increases with the frequency of migraine attacks, there is significant productivity loss interictally as 41.5% of workers have moderate to severe interictal symptoms.

Thankfully, there are evidence-based ways to help workers with migraine, such as social support (between colleagues and by supervisor), job satisfaction, a sense of autonomy, and workplace accommodations (such as natural lights, noise reduction, scent-free areas, regular breaks, air quality). Small interventions such as raising awareness in the workplace and helping a supervisor understand the disease can have a huge impact. One patient of the author was about to lose her job as a cashier at a supermarket due to the numerous work absences she had because of her chronic migraine. After discussions and a doctor’s note, her supervisor helped her change her job from cashier to bagger, so instead of constantly rotating her neck to look at a bright screen while scanning, she was placing the groceries in bags. She was also allowed to take regular breaks to lay down on a mat in a dark, quieter closet. These accommodations enabled her to continue working full time with rare absences.

Migraine workplace education and management programs offered to all employees and supervisors increase understanding of the disease, decrease stigma, improve diagnosis and treatment, and increase productivity. It is crucial to educate the entire employee population and not target a specific group.

The Fujitsu Headache Project enrolled 73,432 (91%) of its employees in Japan with a migraine prevalence of 17%. This workplace education and management program improved:

• the understanding of headache disorders (73% of participants)

• the attitude toward colleagues with headache disorders (83% of participants without headache) – productivity

It reduced absences and presentee days by 1.2 and 14 days per employee per year, respectively, with a 32-fold positive return-on-investment.

As workplaces are being redesigned after the COVID-19 pandemic, now is the time for neurologists to advocate for equitable work opportunities for people with neurological diseases and to promote workplace education programs like the International Headache Society Global Patient Advocacy Coalition (IHS-GPAC) Migraine Fitness modules. •

For additional information:

• Begasse de Dhaem O. Migraines are a Serious Problem. Employers Can Help. Harvard Business Review. February 2021.

• Begasse de Dhaem O, Sakai F. Migraine in the workplace. eNeurologicalSci. 2022;27:100408. June 2022.

• Sakai F, Igarashi H, Yokoyama M, Begasse de Dhaem O, et al. Diagnosis, knowledge, perception, and productivity impact of headache education and clinical evaluation program in the workplace at an information technology company of more than 70,000 employees. Cephalalgia. 2023;43(4):3331024231165682.

• IHS-GPAC website.

Dr. Olivia Begasse de Dhaem is on the executive committee of the International Headache Society Global Patient Advocacy Coalition (IHS-GPAC) and co-chair of the IHS-GPAC Summit III in Seoul in 2023.

WFN Educational Days

Update on e-Learning opportunities.

By Riadh Gouider, Wolfgang Grisold, Steven Lewis, and Imen Kacem

The World Federation of Neurology (WFN) has been working with regional organizations and with a collaboration of other international organizations to create free e-learning days for neurologists, residents in neurology, and other health care professionals around the world.

The concept of these one-day educational events was boosted by the situation caused by COVID-19 pandemic, which suspended face-to-face conferences and regional teaching courses. The idea was to focus on one region, but also open the event to worldwide participation. The participation is free but registration is necessary.

The creation of these e-Learning days began with the African Region and was organized jointly with the African Academy of Neurology (AFAN).

The inaugural e-Learning Day, First WFN-AFAN e-Learning Day, took place Oct. 10, 2020. The theme was “Stroke: A Treatable and Preventable Disease,” with the collaboration of the World Stroke Organization (WSO), the European Academy of Neurology (EAN), and the American Academy of Neurology (AAN). Among those who registered, 576 participants from 60 countries participated in the event, with 513 participants from 31 African countries.

It was followed by the Second WFN-AFAN e-Learning Day, which took place on Nov. 6, 2021, and the overarching theme was epilepsy. The EAN, AAN, and the International League Against Epilepsy (ILAE) provided support for this educational event.  The participation rate reached 48.5% of the registrations. Participants from 88 countries, including 33 African countries, attended the e-learning day.

The Third WFN-AFAN e-Learning Day was held Nov. 3, 2022. The event covered a number of topics on the theme of “Movement Disorders.” The Movement Disorders Society (MDS), AAN, and the EAN collaborated on this event. There were 514 attendees from 84 countries who participated in the event worldwide, with 334 participants from 30 African countries.

This year, the Fourth WFN-AFAN e-Learning Day will take place Saturday,  Dec. 2, 2023, and will focus on neuropathies with the support of the AAN, EAN, the International Congress on Neuromuscular Diseases (ICNMD), and the Peripheral Nerve Society (PNS).

These interactive e-learning days consist of a one-day program, primarily in English conferences, and with French parallel sessions, with the participation of local and international speakers.

In addition to the successful WFN-AFAN days, for three consecutive years, the WFN and AFAN have been jointly organizing, with the International Headache Society (IHS) and the Global Patient Advocacy Coalition (IHS-GPAC), educational days on the diagnosis, management, and support of patients with headache. The aim is to improve the knowledge of practitioners in Africa and to raise their awareness of headache disorders, hoping to contribute to improving the management of headache disorders on this continent.

The first Education in Headache to Health Care Providers in Africa (EHHPA) was conducted over two days (Saturday, Aug. 21, 2021, and Saturday Sept. 4, 2021), with one parallel French conference on the first day and two parallel French conferences on the second day. The total number of attendees reached 498 participants from 71 countries with 65% of the participants from 32 African countries.

The Second Annual EHHPA, a one-day event, was held Saturday, May 14,  2022. It complemented the first one by focusing on the management and support of primary headache, with a focus on non-pharmacological management options, as well as the importance and strategy of advocacy for headache disorders.

The number of parallel French sessions increased to six parallel French conferences. 310 participants attended the Second Annual EHHPA hosted 310 participants of which 170 were neurologists and residents in neurology.

French parallel session

In 2023, the Third Annual EHHPA will be held Saturday, Sept. 23, 2023. Two parallel French sessions are scheduled, with three conferences each.

Registration is open now.

Following this successful pattern, the First WFN-AOAN e-Learning Day will be co-organized with the Asian and Oceanian Association of Neurology (AOAN), and have as the theme Advancing Stroke Care in Asia. This first Asian e-Learning Day is being planned for Saturday, Nov. 18, 2023 with the collaboration of the World Stroke Organization (WSO), the Asia Pacific Stroke Organization (APSO), and the World Federation for NeuroRehabilitation (WFNR).

These successful e-Learning activities are highly practical for neurologists and other health care professionals all over the globe to improve their neurological skills and practice. They play an important role within the mission of WFN, which is to foster quality neurology and brain health worldwide.

For more information and updates, visit the WFN website. •

Neuroinfectious Disease Update

Update on several noteworthy neuroinfectious disease issues, including arboviruse as well as COVID-19 exposure in-utero.

By B. Jeanne Billioux, MD, and Avindra Nath, MD

The WHO has recently released reports denoting the expansion of cases of dengue and chikungunya beyond historical areas of transmission in the Americas, as well as warnings for increased expansion of transmission in areas of Europe that were previously unaffected (https://www.who.int/emergencies/disease-outbreak-news/item/2023-DON448; https://www.bloomberg.com/news/articles/2023-04-05/europe-at-risk-of-dengue-and-zika-summer-outbreaks-who-warns#xj4y7vzkg).  Climate change may contribute to broadening habitat for certain viral-spreading arthropods, including the Aedes aegypti mosquitoes that harbor dengue, chikungunya, and zika viruses.

Dengue has been on the rise this season, with many South American countries including Colombia, Brazil, and Argentina, as well as Asian countries, such as the Philippines, recording increased caseloads compared to prior seasons (outbreaknewstoday.com). The U.S. has also recorded several cases in Southern Florida, most of them related to travel, as well as autochthonous transmission in Maricopa County in Arizona this year (https://www.floridahealth.gov/diseases-and-conditions/mosquito-borne-diseases/_documents/2023-week14-arbovirus-surveillance-report.pdf; https://www.cdc.gov/mmwr/volumes/72/wr/mm7211a5.htm). 

Dengue may present broadly, from asymptomatic cases to hemorrhagic fever; most typically, in symptomatic cases, it causes flu-like symptoms. Neurologic complications occur uncommonly, and include encephalopathy from multiorgan involvement, encephalitis, PRES, stroke (both ischemic and hemorrhagic), and immune-mediated syndromes such as transverse myelitis, Guillain-Barre syndrome, acute disseminated encephalomyelitis, myositis, mononeuropathies, and cyberelites. Some patients may develop hypokalemic paralysis (Trivedi 2022). No known treatments for Dengue exist, but several vaccines are in clinical trials or in various stages of gaining approval, including the recent approval in Brazil https://www.thepharmaletter.com/article/takeda-gains-approval-in-brazil-for-qdenga?print=1.

Known Neurologic Complications of Dengue and Chikungunya Chikungunya cases have also been increasing in early 2023, including a surge of cases in Paraguay and Brazil, with Brazil recording over twice as many cases compared to last year (http://outbreaknewstoday.com/author/news-desk/). Although the disease commonly causes fever, fatigue, malaise, and arthralgias (sometimes severe), over 200 cases of suspected meningoencephalitis have been reported due to chikungunya virus in Paraguay during this current outbreak, a rare presentation, (https://www.cidrap.umn.edu/chikungunya/paho-warns-rising-chikungunya-cases-americas-some-fatal) which needs to be closely watched since it could represent an evolution in viral tropism. Other known neurologic complications of Chikungunya include encephalopathy, encephalitis, myelopathy, and peripheral neuropathies, including Guillain-Barre syndrome (Brizzi 2017).

Of note, efforts to reduce transmission of dengue, chikungunya, and the neurovirulent zika virus by using Wolbachia bacteria infection in Aedes aegypti mosquitos have been underway in a number of different areas with varying levels of success. Wolbachia infection of these mosquitos essentially blocks viral replication of dengue, chikungunya, and zika in the mosquito, leading to decreased transmission of these viruses. Recent reports by the World Mosquito Program have noted decreased dengue spread in Java, Indonesia, and the Aburra Valley in Colombia, among other places, where the Wolbachia-infected mosquitos have been released (https://www.worldmosquitoprogram.org/en/learn/scientific-publications).

In COVID-19 related news, a recent case series has reported two neonates born with brain abnormalities thought to be related to in-utero exposure to SARS-CoV2. Both babies were born to mothers who had contracted SARS-CoV-2 in their second trimesters (one with re-infection during the third trimester). Both babies were SARS-CoV-2 negative at birth, but had microcephaly, seizures starting on the day of delivery, and developmental delay over time. Both infants had SARS-CoV-2 antibodies and elevated inflammatory markers, and the placenta from each case also displayed SARS-CoV-2 proteins, increased inflammatory markers, as well as evidence of decreased fetal perfusion. One infant died at 13 months of life; on autopsy, the infant was found to have white matter loss, gliosis, vacuolization, as well as evidence of SARS-CoV-2 viral proteins by immunofluorescence throughout the brain, indicating viral infection. The authors note that these two cases are extremely rare, but indicate that in-utero exposure to SARS-CoV-2 in the second trimester has the potential to cause neurodevelopmental sequelae (Benny 2023).  •

References:

  1. Trivedi S, Chakravarty A. Neurological Complications of Dengue Fever. Curr Neurol Neurosci Rep. 2022 Aug;22(8):515-529. doi: 10.1007/s11910-022-01213-7. Epub 2022 Jun 21. PMID: 35727463; PMCID: PMC9210046.
  2. Brizzi K. Neurologic Manifestation of Chikungunya Virus. Curr Infect Dis Rep. 2017 Feb;19(2):6. doi: 10.1007/s11908-017-0561-1. PMID: 28233188.
  3. Benny M, Bandstra ES, Saad AG, Lopez-Alberola R, Saigal G, Paidas MJ, Jayakumar AR, Duara S. Maternal SARS-CoV-2, Placental Changes and Brain Injury in 2 Neonates. Pediatrics. 2023 Apr 6:e2022058271. doi: 10.1542/peds.2022-058271. https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2022-058271/191033/Maternal-SARS-CoV-2-Placental-Changes-and-Brain?autologincheck=redirected

II Latin American Course of Neuroepidemiology

Punta del Este, Maldonado, Uruguay | March 6-10, 2023

 

By Dr. Carlos N. Ketzoian

Participants in the II Latin American Course of Neuroepidemiology, Punta del Este, Maldonado, Uruguay, March 6th to 10th, 2023. In the center, Dr. Daniel Salinas, Minister of Public Health of Uruguay.

Last March, the II Latin American Course of Neuroepidemiology took place in Punta del Este, Maldonado, Uruguay. This course was organized by the neuroepidemiology section of the Institute of Neurology at the University of the Republic in Uruguay, and the Université de Limoges in France, with the endorsement of the World Federation of Neurology (WFN). The course was held at the Eastern Regional University Center (C.U.R.E.) of the University of the Republic, Uruguay.

The I Latin American Course of Neuroepidemiology took place in Panama City, Panama, in April 2018. This II course was initially planned to take place in March 2020. Unfortunately, the COVID pandemic forced the organizers to postpone it until 2023. The structure and the content of these Latin American courses are based on the experience of the Erice’s International Course of Neuroepidemiology. (See World Neurology, posted Feb. 24, 2023. Report on the Ninth International Course of Neuroepidemiology: Methods and Clinical Applications worldneurologyonline.com).

Twenty-one students, five teachers, three coordinators, and two invited speakers participated in five intense and enriching days of learning. Apart from local participants from Uruguay, the remaining students came from different Latin American countries: Argentina, Brazil, Chile, Colombia, Costa Rica, Dominican Republic, and Peru. Two participants came from outside of the region (Republic of Armenia).

Profs. Walter Rocca (U.S.), Giancarlo Logroscino (Italy), Pierre-Marie Preux (France), Ruth Ottman (U.S.), Brandon Coombes (U.S.), and Carlos Ketzoian (Uruguay) were part of the teaching team. The course was coordinated by Prof. Carlos Ketzoian (Uruguay), Prof. Regina Alvarenga (Brazil), and Drs. Fabián Gómez Elso and Lucía Castro (Uruguay).

Dr. Sebastián Ameriso from Argentina gave a lecture on the epidemiology of stroke in Argentina and Prof. Abayubá Perna from Uruguay gave a lecture on the genetic epidemiology of limb-girdle muscular dystrophy (LGMD) in Uruguay.

Study design aspects, genetic epidemiology, and statistical methods applied to neuroepidemiology were discussed in the morning. After lunch, the participants analyzed published clinical-epidemiological studies in which the different methodologies presented in the mornings were addressed. Each day, the activities ended with lectures on different topics.

The course activities also included the IV Journée d’Amitié Neurologique Franco-Panamericaine with lectures by Profs. Abayubá Perna (Uruguay), Regina Alvarenga (Brazil), and Pierre Marie Preux (France). The program was endorsed by the French Embassy in Uruguay. A cocktail reception took place after the lectures. The Minister of Public Health of Uruguay, Dr. Daniel Salinas, who is a neurologist, participated in this opening academic and social event. On Friday, March 10, the course closed with a social dinner of traditional “Asado Criollo” (Uruguayan barbecue).

Participants, professors, and coordinators had the opportunity to discuss in-depth different aspects of the clinical-epidemiological methodology for the study of neurological diseases. This full-immersion course format allowed total focus on the subjects, and the participants were not distracted by other activities during the day.  The participants worked together for eight hours a day for five days.

We would like to emphasize that this kind of course corresponds to the objectives defined by the WFN Specialty Group on Neuroepidemiology during the meeting which took place Oct. 30, 2019, at the World Congress of Neurology in Dubai. •

Carlos N. Ketzoian is chair of the WFN Specialty Group on Neuroepidemiology.

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