The Axon – Issue #2, May 2024

If this is your first time here, thanks for joining us! If you're a repeat reader of NeurologyLive?, welcome back! For the former, we're a team of editors for a clinical news publication that provides the latest coverage of neurology-related FDA news and the therapeutic pipeline, expert opinions and insights, in-clinic care and advocacy, and major medical meetings throughout the year. Our mission is to deliver?quality and relevant information to?health care professionals treating neurological diseases to help them achieve the best patient care possible.

This is The Axon, your new go-to place to get that insight, right here on LinkedIn.

On the first of each month, we'll bring you a new edition that highlights the trending topics and important updates our editorial staff reports on. We'll point you to the news that matters and the specialist insight that can help your clinical practice.

Post-AAN Perspectives

The American Academy of Neurology may have wrapped up in April, but as it is among the world's largest neurology-focused meetings, it is hard to cover every bit of great science presented there in a single month. Additionally, it takes a little time to process everything that attendees learn in the 7 days of the conference—so, a few weeks after it ended, our team spoke with a trio of experts from Cleveland Clinic who offered their unique perspectives on the advances in their respective fields , highlighting some of the notable research and discussion from the meeting.

Specifically, we spoke with Dileep Nair, MD, an epilepsy neurologist and head of the adult section in epilepsy at the Epilepsy Center, who provided insight on the epilepsy-focused side of the meeting; Andrew Russman, DO, the head of the Stroke Program and medical director of the Comprehensive Stroke Center, who shed light on the stroke-themed presentations from the meeting; and Robert Bermel, MD, the director of the Mellen Center for MS, who rounded out the group by giving the latest on advances in multiple sclerosis (MS).

To offer just a glimpse of some of their comments:

• Dileep Nair, MD: The most important thing I would highlight is the expanding role of therapy and hope for patients in whom drug-resistant epilepsy is still a lifelong burden for them at this moment in time. There is expanding roles of new therapies and new types of medications that will hopefully diminish the burden of epilepsy in those patients. There's a theme of hope through the research presented that in the future, our methods of how we care for epilepsy may change fundamentally.
• Andrew Russman , DO: We're seeing greater trends toward identifying opportunities for catheter-based procedures to try and help patients with strokes of different types. At other meetings, we’ve seen a lot of presentations about middle meningeal artery embolization for patients who have subdural hemorrhage. While that particular condition was not a big theme at the AAN, one of the presentations that I was impressed with was an endovascular technique in order to provide CSF shunting for patients with hydrocephalus after subarachnoid hemorrhage. Currently, endovascular techniques or endoscopic techniques have not reached the recommended mainstream for patients with subarachnoid hemorrhage. External ventricular drains are sort of the mainstay of therapy for patients with hydrocephalus with subarachnoid hemorrhage; however, this shunting system that was developed for endovascular use seems feasible. I'd be excited to see what further work is done to show how it compares to some of our traditional techniques, especially external ventricular drains. If it were comparable, maybe easier to perform with less risk for patients, I certainly see the opportunities there, but we don't know that information yet.
• Robert Bermel, MD: We saw a combination of data on existing therapies. One of the most exciting things was the 10-year follow-up data on the ocrelizumab trials for both relapsing-remitting MS and progressive MS. This data is reassuring, showing that patients who started B-cell depleting therapy with ocrelizumab early do very well over the long term. For instance, over 90% of the patients followed up for 10 years didn't need a walking aid, and over three-quarters of those who started on ocrelizumab early did not have any disability progression. These long-term efficacy results with ocrelizumab are encouraging, especially since many patients are now on B-cell depleting therapy.

Huntington Disease Awareness

Although the main focus of our coverage is on the latest science being done that can translate to the clinic, it would be dishonest to pretend that advocacy and awareness groups and campaigns don't play a role in helping to progress clinical care. Awareness days often bring ongoing background conversations happening in subgroup scientific circles to the forefront of the wider medical field—and even to the general population—which can help to bring in funding and generate interest to progress fields that are in need of more attention. One of those fields is Huntington disease (HD). As a difficult-to-treat disease, HD is in dire need of effective, disease-modifying therapies, and the conversation around this need was apparent on May 15, which is annually hailed as Huntington Disease Awareness Day .

Victor Sung, MD, who serves as director of the University of Alabama at Birmingham 's Huntington’s Disease Clinic, told us that the day is "critically important because it's a rare disease. It doesn't get much press. We don't have a Michael J. Fox, or somebody out there that can really shine the light on the disease. The importance of awareness is still in the referrals that I get. We have a big center of excellence, and yet, the majority of my referrals are patients who refer themselves to me. They find me, and they're not from other doctors. And it's strange. If I talk to other doctors who are maybe not as aware of Huntington disease, they ask, 'Why don't you send your patients with Huntington to me?' and they'll say things like, 'Huntington disease is this incurable, untreatable disease, so why should I send them hours away? Because what can you do for them?'"

It's a sad but real reality for experts like Sung to experience this misunderstanding that without those disease-modifying treatments, there is nothing that can be done. As Sung puts it, "we obviously need disease-modifying therapy, and we're working on it and getting close to it. But I think, just sounding the call that we really do have treatments that can be effective and help patients to live better quality of life now while we're working on the curative treatments. We can do both."

Highlighting Clinician and Community Insights

This month, we were fortunate enough to be able to highlight the insights of one Stephanie Richardson, MS, CCC-SLP, an outpatient lead speech-language pathologist at Brooks Rehabilitation , who discussed the unique aspects of speech therapy and the pivotal role it plays in helping patients with swallowing and other related functions. In a piece she wrote for NeurologyLive, she noted that a lesser-known—but highly significant—role of speech therapy is to help patients swallow. Dysphagias can surface because of various reasons, from neurological disorders to problems with breathing, and can significantly impact an individual's quality of life. Without treatment, these issues can lead to serious problems like malnutrition, dehydration, aspiration pneumonia, and social isolation—pointing to a real need for speech pathology to help patients via diagnosis and treatment, ensuring that patients can swallow safely and efficiently.

Another submission we received this month was from Neal K. Shah , CEO of CareYaya Health Technologies, as part of an ongoing column he publishes on NeurologyLive. This time, he discussed how the lack of diverse data in neuroscience —particularly for African American and minority populations—will limit the ability of AI to equitably diagnose dementia early across all populations. As he notes in his piece, minority populations are up to twice as likely to develop dementia as the White population and are less likely to receive formal diagnoses earlier because of a lack of access to care and systemic biases. But some of the technological advances stand to offer help if these biases can be addressed. In his words, "These groups stand to benefit the most from advances in machine-learning models that could enable lower-cost diagnostics."

Advancing Care for MOGAD

Although it is a rare disease, myelin oligodendrocyte glycoprotein antibody disease (or MOGAD), has an annual incidence of 3.4 to 4.8 per million individuals. It poses challenges in diagnosis, as its presenting features are similar to other demyelinating diseases, such as MS and NMOSD .

However, as the availability of cell-based assays to detect MOG has increased over the past decade, MOGAD has become more formally recognized, with diagnostic criteria published in 2023. Earlier this year, Mayo Clinic launched its MOGAD Clinic , a first-of-its-kind specialty clinic devoted to the care of patients with this rare disease. The clinic, driven by a multidisciplinary approach, offers expert services from Mayo locations in Jacksonville, Florida; Phoenix and Scottsdale, Arizona; and Rochester, Minnesota. Our team spoke with several of the experts who're leading the way for care at the new clinic, including Eion Flanagan, MBBCh; Sebastian Lopez-Chiriboga, MD; and Cristina Valencia Sánchez , MD, PhD, to get some insight on how they're hoping to positively affect the care of these patients.

"These multidisciplinary clinics are so important for patients with MOGAD. The disease is new—so I think this is the first-ever designated MOGAD clinic—and many other centers will follow along. It’s important for most patients to get that multidisciplinary care. We have many multidisciplinary clinics for multiple sclerosis, autoimmune neurology, and NMO for transverse myelitis, but for MOGAD, we need to have a representative clinic that looks after patients in a holistic way, including neuro–ophthalmology [in that care paradigm],” Flanagan said.

CMSC 2024 and World MS Day

We've wrapped up this month by heading to Nashville, Tennesee, to cover the CMSC 's Annual Meeting, which overlaps quite harmoniously with World MS Day, another important awareness campaign in neurology. While at the Music City Center, our team spoke with more than a dozen experts across the continuum of MS care—including physicians, nurses, rehabilitation specialists, and more.

Just some of those conversations included:

• Bruce Cree, MD, PhD, the clinical research director of the University of California, San Francisco Multiple Sclerosis Center, who discussed the early-onset progression in multiple sclerosis and emphasized the need for targeted therapies in this patient population, as well as results from clinical trials assessing BTK inhibitors in relapsing multiple sclerosis and the ongoing research to explore more effective treatments.
• Nicola De Stefano, MD, PhD, a professor of neurology in the department of medicine, surgery, and neuroscience at the Università di Siena , who shared perspectives on an analysis of the MAGNIFY-MS study , in which treatment with cladribine demonstrated impacts on CNS-related pathology in MS.
• Anthony Feinstein , MPhil, PhD, a professor of psychiatry at the 加拿大多伦多大学 , who discussed the various medications for multiple sclerosis fatigue that have been tested but ultimately failed to outperform placebo in clinical studies.

Our full slate of coverage of the CMSC's Annual Meeting can be found by heading to our website, here: CMSC 2024.

Additionally, we were fortunate enough to have CMSC's president-elect, Jeff Wilken , PhD, join us each day to interview some of the key expert clinicians who were in attendance, right from the floor of the annual meeting. This program, called CMSC Live, serves as a video recap of the conference and featured some truly stand-out highlights.

On Day 1 of the meeting (click here to watch) , Wilken chatted with Robert Naismith, MD, a professor of neurology at Washington University in St. Louis about his work presented at the annual meeting and his insights on the first day, including the keynote address given by Darin Okuda, MD, on novel uses of MRI and imaging techniques in MS; Jiwon Oh , MD, PhD, an associate professor of neurology at the 加拿大多伦多大学 and a staff neurologist, scientist, and the medical director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital Hospital, about her talks about how MRI utilization has evolved in multiple sclerosis and switching disease-modifying therapies during the course of treatment, and why patients might switch; and Tony Traboulsee , MD, a professor and the Research Chair of the MS Society of Canada at the The University of British Columbia , about the state of imaging in multiple sclerosis and the collaboration of various groups at CMSC to build out guidelines and standards of practice, including groups like NARCOMS, MAGNIMS, and others.

Here's a peek at the Day 1 segment (but you can watch them all by clicking the hyperlinked text for each day in this newsletter):

On Day 2 of the meeting (click here to watch) , he spoke with Fred Lublin , MD, the Saunders Family Professor of Neurology and director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Icahn School of Medicine at Mount Sinai about his presidential lecture on the last 3 decades of MS therapies, what the field has learned, and what he's looking forward to at CMSC; Brian Hutchinson , PT, MSCS, the interim program manager of the John A. Schafer, MD, Multiple Sclerosis Achievement Center at Dignity Health , about the role of physical therapists and other specialists in MS care, as well as the MS Day Program model that he and colleagues developed for patient management; and Rob Motl , PhD, a professor of kinesiology and nutrition, and professor of Rehabilitation Sciences at the University of Illinois Chicago College of Applied Health Sciences, about his favorite aspects of the annual meeting, as well as his work in the rehabilitation sector of MS care, his excitment about the younger investigators at the meeting, and a sneak peek at his talks in the coming days.

And finally, on Day 3 of the meeting (click here to watch) , Wilken talked to Marijean Buhse, PhD, RN, NP-C, MSCN, a clinical professor of Graduate Studies/Advanced Practice Nursing and the Program Director of the Doctor of Nursing Practice at Stony Brook University School of Nursing, about her panel presentation on multidisciplinary NMOSD care, the need for better definition of patient-reported outcomes in MS, and her presentation on MS aging and the conversation about stopping disease-modifying therapy; Amy (Burleson) Sullivan , PsyD, ABPP, an associate professor of medicine at the Cleveland Clinic Lerner College of Medicine , the director of the Neurological Institute Engagement and Well-being, the director of Behavioral Medicine & Research at the Mellen Center for MS, and the chair of the Neurological Institute Engagement and Women’s Leadership Development at Cleveland Clinic, about the ability to reconnect with colleagues at CMSC, Francios Bethoux's talk on art as a therapeutci medicine in MS, her presentation on stress management tools in MS, empowering women in leadership roles in medicine, and the need to better address burnout among physicians; and John DeLuca, PhD, ABPP, FACRM, FAPA, FAPS, FNAN, the senior vice president for Research and Training at Kessler Foundation, and a professor in the Department of Physical Medicine & Rehabilitation and the Department of Neurology at Rutgers, New Jersey Medical School, about being inducted into the 2024 class of Giants of MS, his symposium of addressing and defining fatigue in clinical care, the failure of pharmacotherapy for cognitive challenges in MS, and the lack of clinical application of cognitive rehabiliation tools despite the thorough and exisiting literature supporting its use.

That wraps up this month's issue of The Axon—thanks for reading! Got a lead on a story you want to share? Let us know—email Matt Hoffman, our editorial director, at [email protected] .

See you next month!