Amyotrophic Lateral Sclerosis (ALS)

Podcast Transcript

Neuro Pathways Podcast Series

Release Date: February 1, 2025
Expiration Date: January 31, 2026

Estimated Time of Completion: 30 minutes

Amyotrophic Lateral Sclerosis (ALS)
Rebecca Kuenzler, MD

Description
Each podcast in the Neurological Institute series provides a brief, review of management strategies related to the topic.

Learning Objectives

• Review up to date and clinically pertinent topics related to neurological disease
• Discuss advances in the field of neurological diseases
• Describe options for the treatment and care of various neurological disease

Target Audience
Physicians and Advanced Practice providers in Family Practice, Internal Medicine & Subspecialties, Neurology, Nursing, Pediatrics, Psychology/Psychiatry, Radiology as well as Professors, Researchers, and Students.

ACCREDITATION

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• American Medical Association (AMA)
  Cleveland Clinic Center for Continuing Education designates this enduring material for a maximum of 0.50 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
  
  Participants claiming CME credit from this activity may submit the credit hours to the American Osteopathic Association for Category 2 credit.

• American Nurses Credentialing Center (ANCC)
  Cleveland Clinic Center for Continuing Education designates this enduring material for a maximum of 0.50 ANCC contact hours.

• Certificate of Participation
  A certificate of participation will be provided to other health care professionals for requesting credits in accordance with their professional boards and/or associations.

• American Board of Surgery (ABS)
  Successful completion of this CME activity enables the learner to earn credit toward the CME requirements of the American Board of Surgery’s Continuous Certification program. It is the CME activity provider's responsibility to submit learner completion information to ACCME for the purpose of granting ABS credit.

Credit will be reported within 30 days of claiming credit.

Podcast Series Director
Andreas Alexopoulos, MD, MPH
Epilepsy Center

Additional Planner/Reviewer
Cindy Willis, DNP

Faculty
Rebecca Kuenzler, MD
Neuromuscular Center

Host
Glen Stevens, DO, PhD
Cleveland Clinic Brain Tumor and Neuro-Oncology Center

Agenda

Amyotrophic Lateral Sclerosis (ALS)
Rebecca Kuenzler, MD

Disclosures

In accordance with the Standards for Integrity and Independence issued by the Accreditation Council for Continuing Medical Education (ACCME), The Cleveland Clinic Center for Continuing Education mitigates all relevant conflicts of interest to ensure CME activities are free of commercial bias.

The following faculty have indicated that they may have a relationship, which in the context of their presentation(s), could be perceived as a potential conflict of interest:

The following faculty have indicated they have no relationship which, in the context of their presentation(s), could be perceived as a potential conflict of interest:Andreas Alexopoulos, MD, MPH, Cindy Willis, DNP and Rebecca Kuenzler, MD

CME Disclaimer

The information in this educational activity is provided for general medical education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient's medical condition. The viewpoints expressed in this CME activity are those of the authors/faculty. They do not represent an endorsement by The Cleveland Clinic Foundation. In no event will The Cleveland Clinic Foundation be liable for any decision made or action taken in reliance upon the information provided through this CME activity.

HOW TO OBTAIN AMA PRA Category 1 Credits™, ANCC Contact Hours, OR CERTIFICATE OF PARTICIPATION:

Go to: Neuro Pathways Podcast February 1, 2025 to log into myCME and begin the activity evaluation and print your certificate If you need assistance, contact the CME office at myCME@ccf.org

Copyright © 2025 The Cleveland Clinic Foundation. All Rights Reserved.

Introduction: Neuro Pathways, a Cleveland Clinic podcast exploring the latest research discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab, and psychiatry.

Glen Stevens, DO, PhD: Amyotrophic lateral sclerosis, often referred to as ALS or Lou Gehrig's disease, is a progressive neurodegenerative disorder affecting nerve cells in the brain and spinal cord leading to loss of muscle control, ultimately resulting in severe disability, and in many cases death within three to five years of diagnosis. The impact of ALS extends beyond patients, deeply affecting their families and caregivers who witness the ruthless progression of the disease.

In today's episode, we're discussing the relentless pursuit by neurologists and researchers to advance understanding and treatments for this devastating disease. I'm your host, Glen Stevens, neurologist/ neuro-oncologist in Cleveland Clinic's Neurological Institute. I'm very pleased to be joined by Dr. Rebecca Kuenzler for today's episode. Dr. Kuenzler is a neurologist and researcher in Cleveland Clinic's Neuromuscular Center. Rebecca, welcome to Neuro Pathways.

Rebecca Kuenzler, MD: Thank you for having me.

Glen Stevens, DO, PhD: So Rebecca, I've known you for a long time, but for those out there, why don't you tell us a little bit about yourself, how you made your way to Cleveland, and what you do on a daily basis.

Rebecca Kuenzler, MD: Sure. So I am a mostly Ohio product. Went to high school in Ohio, then left for a few years for undergraduate at Macalester College. Took a couple years away from school, and then went to medical school in Toledo at what at that time was called Medical College of Ohio, now University of Toledo, and then came to Cleveland Clinic for residency and then fellowship and then stayed on staff and I just keep hanging around.

Glen Stevens, DO, PhD: You do keep hanging around.

Rebecca Kuenzler, MD: I do. It's true.

Glen Stevens, DO, PhD: So let's start with the basics. What is ALS?

Rebecca Kuenzler, MD: So I think in your introduction you really summed it up. It's a loss of the motor nerves. So what that means from a patient or a caregiver perspective is worsening of weakness, and that can show up as ankle weakness or foot drop. It can show up as arm weakness, hand weakness, it can show up as speech or swallowing problems, or shortness of breath. It is something that will tend to change relatively quickly over time, meaning that from month-to-month people will be able to observe changes in their symptoms. So it's something that doesn't have one specific test that we'd be able to say, "Do this one blood test or this one scan and that'll give us the answer." It's really putting a lot of pieces together with the history, the examination in the office, and coming up with a diagnosis.

Glen Stevens, DO, PhD: So you've kind of intimated this a little bit, but if I'm a primary care physician out there, what should alert me that my patient's progressive weakness is ALS and not something else? Or I guess you can also then say what are the red flags that it's not?

Rebecca Kuenzler, MD: I would say the big red flag is painless weakness. So if someone has foot drop and it's coming from a pinched nerve in their back, that's usually a painful thing. Or if they've got some sort of speech problem, but it's coming from a stroke, that shouldn't really get worse over time. So it's that combination of painlessness and ongoing progression, that putting those two together should be a signal. The ALS Association, which is a national international organization that works with patients and families with ALS, has actually developed a tool that folks who are not as familiar with ALS can look at. They call it a tool, I would probably call it a flow diagram, where you're looking at a list of possible symptoms and do the symptoms that you're seeing fit with a potential diagnosis of ALS, and should this person see someone who specializes. They call it ThinkALS. That's the name of the tool.

Glen Stevens, DO, PhD: So I know there are diagnostic criteria for ALS, just like there are for most diseases out there, and certainly in the brain tumor field, it's a different issue than the ALS field, but oftentimes the criteria are helpful for, hey, the person really has a disorder that we think that they have and that they meet criteria that we would want use a clinical trial in this patient. So the trial that I remember when I went through was the El Escorial Criteria, and then I guess the folks in Australia came up with the Gold Coast Criteria.

Rebecca Kuenzler, MD: That's right.

Glen Stevens, DO, PhD: So tell us a little bit about these criteria, what they look at, and where they're useful and where they're not useful.

Rebecca Kuenzler, MD: So the El Escorial Criteria has been around for a longer period of time. As you mentioned, you learned it when you were going through training a few years ago. And the idea behind that is defining how many different parts of the body are affected and how severely they're affected. So we're looking at a mix of upper motor neuron problems and lower motor neuron problems. That's one of the hallmarks of ALS.

So upper motor neuron means stiffness or spasticity. It can mean spasms, on examination it can mean hyperreflexia. For lower motor neuron changes, you're thinking about weakness, that can really go either way, upper or lower motor neuron, sort of a flaccid appearance to a limb or to speech, someone having cramping, fasciculations are another feature. So we're looking at these combinations of upper motor neuron features and lower motor neuron features and how widespread are they in the body?

So the different levels go from possible to probable to definite, depending on whether you have one or two or three different areas of the body. Those areas are defined as bulbar, so the mouth and throat, the cervical segment affecting the arms, and the lumbosacral segment affecting the legs. You can throw thoracic in there, but that one gets a little more tricky to try to figure out. So there are some helpful pieces to that because it helps you define how many parts of the body are affected. So clinical trials use it because they want to find people who have enough of the body affected that you are confident that you have the right diagnosis, but it can get confusing because if you put in someone's chart they have probable ALS by El Escorial Criteria, then as someone who's not familiar with what that means, if you're a primary care physician or referring provider of some sort, or a patient or family member, and today's chart reviewing possibilities that we have online, that can get really confusing to say, "Well, if it's only probable, does that mean that maybe I don't actually have ALS?" And that's not really what it means. It's just defining how much of the body is affected, mostly.

So the idea behind the Gold Coast Criteria is really more of a yes or no. And the Gold Coast Criteria is saying, okay, you've got some sort of progressive weakness, you've got some mix of upper and lower motor neuron findings affecting some part of the body, and as long as you don't have some alternate explanation, you've done reasonable assessments with MRI scans or EMGs, lab work, different things along those lines to make sure that you don't have an alternate explanation, then by Gold Coast Criteria, you're diagnosed with ALS. So from the perspective of a patient or a family member or a referring provider, that makes a lot more sense. And I think that it's useful in that regard. It's still a little unclear what direction the field is going to go when it comes to how that's going to be used in deciding whether patients are eligible for clinical trials or those sorts of things. So I think that's still something that we'll have to wait and see how that develops over time.

Glen Stevens, DO, PhD: Yeah, I mean if we had a biomarker that would have early onset, because of course my concern with the El Escorial Criteria is that by the time somebody has definite ALS, then if I'm going to go in a clinical trial, I'd like to go... If I do have ALS, but I'm just at the possible ALS, I'd like that drug then. And if I just have possible, there's a good chance that I wouldn't have access to a drug because they want just patients that they realize that they have it. So I think that's always been my concern or issue with the criteria is that it's too stringent, and while it will help give a little cleaner data, it doesn't really ultimately help the patients where we want them to be. Hopefully down the road it will, but that's always been my concern with it.

I think the other problem with that is that patients then go, "Well, maybe they don't think I have ALS," when everybody really probably believes you do have ALS, you just don't meet all the criteria at this point. There's not a really good otherwise working diagnosis of what you would have, and that's probably a disservice to patients as well. So I think the development of new criteria or continual evaluation of new criteria is really probably a good thing,

Rebecca Kuenzler, MD: I agree.

Glen Stevens, DO, PhD: So I'm a primary care physician and patient comes in, they're telling me the story, they got this painless weakness. I see a fasciculation, a little bump underneath the skin, boy, I'm getting a little bit concerned. What's the workup? So I'm looking for you. I look you up in the directory, and I send them to see you, but what's the evaluation? What should be done on these patients besides a good history and exam?

Rebecca Kuenzler, MD: Absolutely, I agree. A careful clinical history and examination, including family history, because there is some subset of these patients where they have an inherited or familial version of an ALS. So that careful clinical history and exam, and then you're looking for alternate explanations. So for the most part that's lab work, usually an EMG, oftentimes MRI scans, and that could be the brain, the cervical spine, the lumbar spine, some combination of those. It's pretty uncommon that we have to do other more invasive testing like spinal taps or muscle biopsies. We would have to really think that there's some other possibility out there, some other muscle disease or some other inflammation affecting the spinal cord of the brain to start going down some of those other paths. So generally lab work, EMGs and MRIs.

Glen Stevens, DO, PhD: So you mentioned, just to sidetrack, inherited. Incidents of inherited ALS?

Rebecca Kuenzler, MD: Yeah, about 10-20% of patients who have ALS have a familial ALS.

Glen Stevens, DO, PhD: And should everybody be screened if the exam and history are consistent with ALS?

Rebecca Kuenzler, MD: We do offer genetic testing to any patient who is diagnosed with ALS. There are currently organizations that are supporting getting free testing for patients, so folks who have an ALS diagnosis don't have to worry about the financial burden of having genetic testing. It can be sent without any cost, no financial cost, but certainly knowing that you have an inherited type of ALS is a different kind of stress, different kind of cost to the individual.

Glen Stevens, DO, PhD: And you mentioned earlier on that people could have a bulbar onset, swallowing, speech difficulty versus they have a peripheral, a foot drop and then it sort of windmills around. Incidents of those two?

Rebecca Kuenzler, MD: So bulbar is much less common. So only about 25% of the patients that we see have symptoms affecting speech or swallowing at the beginning or very early on in their disease. So sometimes people will come in with a combination, but having only problems affecting the bulbar segment would be the least common reason that people would come in.

Glen Stevens, DO, PhD: And what percentage of medical students that notice a fasciculation think they have ALS?

Rebecca Kuenzler, MD: I would say probably a lot of them.

Glen Stevens, DO, PhD: Yeah. And I think that's always surprising to people, that we all have fasciculations, around the eyes or other places.

Rebecca Kuenzler, MD: Sure.

Glen Stevens, DO, PhD: So I think that when you start to read these things and then you notice it on yourself, then that's when people start to let the imagination run wild.

Rebecca Kuenzler, MD: I think you're right.

Glen Stevens, DO, PhD: So I come to see you, you do all the appropriate work up on me, you use the criteria, the testing, you do the EMG on me, you've sent off the diagnostic testing to see if I have a genetic component to it, but I have ALS. Outside of medications that are available, what do you do for me? What options are there? What do I have to look at down the road? What do you start me on? What's your general non-prescription medication first?

Rebecca Kuenzler, MD: So in terms of options, one important piece of the puzzle is a team clinic. So we have a multidisciplinary team that works with ALS patients, so that's a physician, a nurse, social work, speech therapy, nutrition, physical therapy, occupational therapy, we have specific pulmonologists that we work with. So we have a team of folks that spend a lot of time taking care of patients and families when there's an ALS diagnosis. So we have the team clinic set up so that patients will come in and see really all of those providers get all those services over the course of a morning to try to consolidate some of that. Otherwise it ends up being a lot of back and forth. "Well, let's have a visit with this therapist, or let's have you see this pulmonology provider." So it gets a little bit more dispersed and I think that it's helpful to be able to get everyone under one roof and talk about those things together. And then at the end of every meeting that we have with patients, we sit down as a team and make sure that we have all of our plans in place. So if speech therapy thinks that we should do an evaluation of swallowing under X-ray guidance, a modified barium swallow, we can get that order placed. If occupational therapy, talk to them about getting a power wheelchair evaluation, we can get those orders started. So it helps us to keep that clinical care moving along without a lot of sort of disjointed care.

Glen Stevens, DO, PhD: So I like the team approach, and it really takes a village since so many different things can be affected. Cognitive status affected in ALS or only late?

Rebecca Kuenzler, MD: So about half of our patients have some sort of cognitive impairment. Not very many are truly demented. There is a small percent, 5-10%, that really have dementia as a part of their disease. So we kind of think of ALS as being someone more like Stephen Hawking who was probably one of the more famous people who had ALS. He was able to use technology to maintain his life for decades after his diagnosis and could communicate and seemed pretty clear-minded right up to the end. He was a brilliant man. So we think of the ALS being a disease that spares the mind and affects the body, but that's not entirely true. About half of our patients will have some kind of cognitive impairment as a part of their disease.

Glen Stevens, DO, PhD: And it's not surprising, I guess, with any of these neurodegenerative disorders. Of course, when I went through, the teaching was always cognition is spared, sensory is spared, bowel and bladder are spared. It was always the teaching, and not a painful... generally. So medications that you're going to start me on. And I'm sure it varies on the patient, but generally what types of medications?

Rebecca Kuenzler, MD: So there are a few medications that are FDA approved for slowing the progression of ALS. The one that's been around the longest is riluzole, and that one has been around since the '90s. It's a pill, it's twice a day, and so that's something that we start pretty often. That one we believe works by reducing the availability of excitatory amino acids in the brain and spine. We think that these excitatory amino acids cause neurotoxicity in these motor neurons. So you get this sort of toxic cell death from excessive glutamate, specifically. And so by reducing the availability of these glutamate and excitatory amino acids, that can slow down the progression. Now when we look back at the study that originally led to approval of this particular medication, the difference between the control group and the group receiving the active medication was a survival difference of about three months, so it's something, but it's not a lot.

There have been some follow-up studies that have tried to look at whether that survival is different now that we have more advanced strategies or a better understanding of how to care for patients, and it looks like in some of those studies the difference is more like six months, maybe even up to 18 months. The problem is that those are self-selected patients. They've already decided whether they want to be on riluzole or not on riluzole. So it's not randomized, and that puts a lot of bias into those kinds of studies. So that's a medication that we have available and do recommend.

There's another FDA-approved medication called edaravone, and that's a liquid, actually. That one is sort of funny because the way that it's given, you start off taking this liquid once a day for 14 days, then you take two weeks off, and then you take it 10 out of 14 days, two weeks on, two weeks off. So it's Monday through Friday, two weeks on, two weeks off. It's a little bit odd. That's the way that they did it in the trials and there's been some additional research, does it make any difference taking it every day, and they didn't see that there was a difference with taking it every day versus the current prescription pattern. That medication is effectively an antioxidant medication. So again, trying to reduce some of the oxidant stress that happens as a part of this neurodegenerative process, and that one's been a little bit more controversial. There have been studies that showed that there was benefit. That had a very selective population that was allowed into the study. There have been additional studies that looked at a more typical patient that we would have in a medication trial for ALS and there was not clear benefit. The original trial that led to the approval again looked like the difference was three, four months in terms of survival for people on the medication versus not on the medication. So that's another one that's available and that we can offer for patients.

Glen Stevens, DO, PhD: It's interesting with the oxidative stress, it reminds me of the tocopherol trials that I think Lou Gehrig was reported to be on the vitamin D trials, and it's the same concept of oxidative stress and that we're going to cure it that way, and here, so many years later, we're sort of back with the same medication. Does it matter if you have bulbar onset or systemic disease for these FDA drugs?

Rebecca Kuenzler, MD: There isn't a known difference in how people will respond to the prescription medications, depending on their site of onset.

Glen Stevens, DO, PhD: If they have familial ALS, they have the superoxide dismutase mutation, can you use it for that as well or a separate treatment for that?

Rebecca Kuenzler, MD: Any of the genetic, the familial versions of ALS, we also can prescribe these medications. The SOD-I, the superoxide dismutase 1 mutation that you mentioned is the genetic mutation we've known about for the longest period of time, although not the most common. It's only 1 or 2% of all patients who have an ALS diagnosis. And there is a medication that was approved two years ago, I want to say, called tofersen, and that one is even more tricky to provide medication. It's actually an intrathecal injection, so think reverse spinal tap. So you're injecting the medication into the spinal fluid. It's an antisense oligonucleotide. What that means is that it goes into the system and it's intended to attach to the DNA to not allow more SOD1 to be produced. So it's interfering with the production of that SOD1 protein, and buildup of that SOD1 protein is thought to be one of the reasons that you have the nerve degeneration that happens in the SOD1 familial ALS patients.

Glen Stevens, DO, PhD: Well, I would think naturally because there's not very many treatments out there and the treatments that are out there aren't providing what patients need long-term-wise for the most part, patients are looking at alternative or complementary therapies. What are patients coming to you with?

Rebecca Kuenzler, MD: A lot of things. We get emails every week. MyChart messages, I suppose I should say. So we get messages every week that are asking about this thing that they read about or that thing that they read about. I would say the one we hear about most often is stem cell treatments. It's a lovely theory that if you give someone this cell that can become anything, that it'll go to the right place and become a new motor neuron and take over the responsibility for this motor neuron that's dying off as a result of an ALS.

The problem is that the stem cells just aren't that smart, and the doctors aren't that smart about how to get them where they're supposed to go or do what we would want them to do. So if we really thought that stem cells were going to be able to take over these motor nerves, we'd have to have them replace all of these upper motor neurons that are up in the brain, and those then have to send signals down through the brain into various parts of the lower brain and spine. And then we'd have to have another set of stem cells that go into the lower brain and spine and the different nuclei and anterior horn and all these places that these motor neurons start that are going out to the body, these lower motor neurons, have those all substituted with new stem cells, and be sure that isn't something else that's going on in the system that's only going to kill those off.

So to try to substitute all of that system, we don't know how to do that. We frankly don't know how. And I think the time that I get a little frustrated is there are facilities that will offer stem cell treatments that are off-label or not FDA-approved, so they're out-of-pocket expense, and someone will take some adipose tissue, some fat cells out of the abdomen, turn them into stem cells, and then put them in an IV and give them to you, and that's supposed to, in theory, do something, but we don't have any evidence to show that it really does anything. So it can be a costly thing to decide that you're going to do one of these not-FDA-approved treatments like these stem cells.

Glen Stevens, DO, PhD: Are there different variants of ALS where people can have a very benign course of ALS, or is it pretty much everybody follows the script?

Rebecca Kuenzler, MD: Most people follow the script. With anything, there's going to be variability, so we certainly have patients where if we think about the survival, typically three to five years, we do have patients where they progress very rapidly. There are specific genetic mutations where we know that happens, but even for people without a known genetic mutation, they can progress more rapidly for reasons that we don't entirely understand. So it can be a matter of eight months, a year. Then we have other patients who, for, again reasons we don't understand, will completely blow the curve and be coming back to our ALS team for 10 years, 15 years, and we don't really know why that happens. At one point, one of my colleagues tried to look back at a group of patients who fit that mold who were coming back after 10-plus years after a diagnosis of ALS, trying to figure out was there something that we could look back and say what was different about this group of patients that had a longer survival, and we weren't really able to pull anything specific out of that.

We do know that patients who have bulbar symptoms, so speech and swallowing problems very early in their disease, and people who have a lot of respiratory problems, because the phrenic nerve to the diaphragm is affected by this as well, those folks will tend to have a shorter life expectancy on average compared to people who start with limb onset, so weakness in the arm or weakness in the leg. Other than that, there are not a lot of things that will really change the trajectory of someone's disease. Being a little older will make your disease course a little shorter on average. There are certain toxins that folks have been exposed to that seem to be a problem, and there's ongoing research in that regard, but there are not a lot of different factors that we can really do anything about.

Glen Stevens, DO, PhD: So it's shocking to me that 10 years ago, they had the ice bucket challenge. It's been 10 years. And my understanding is worldwide, $200, $300 million was raised. Any research come out of that that we know of?

Rebecca Kuenzler, MD: One thing that I can tell you is that the ALS Association was a pretty large recipient of some of these ice bucket-raised funds, and they tried to be very transparent about how they were using that money. And at least half of it actually went to support patients and families. So I think there was this initial idea that it was going to go mostly toward research, and it did go to research, but not all of it went to research, because supporting the people who are diagnosed now is also an important part of the mission.

In terms of the research dollars that were spent, I would have to say I haven't seen a specific breakthrough. Certainly there has been incremental discovery that's happened as a result of that. So there'll be things that are looking at cell models where we're able to figure out something about what the SOD1 protein may or may not do, or different mouse models or things along those lines. But it definitely has not gotten to the point where money that came from that ice bucket challenge has clearly led to, say, a new medication. We haven't seen something along those lines.

Glen Stevens, DO, PhD: So what's on the horizon? What are we looking at?

Rebecca Kuenzler, MD: So it always feels like we're nibbling about the edges when it comes to trying change the trajectory of the disease for these patients. And so there are ongoing trials that are looking at a variety of different medications. The trial that we're most involved in here is one called the HEALEY Platform Trial. It's run out of the HEALEY Center at Massachusetts General Hospital, and there are over 70 sites across the country that are a part of this particular trial. And when we say platform trial, we're talking about having a set protocol for how we approach these patients with the idea that if we don't have to reinvent the protocol every time and we can plug new medications in, that that will help us move through medications more quickly. And so we've been a part of that for a couple of years now. They are naming their regimens by letter. We're up through regimen G. and a couple of them have gone on to additional clinical trials and those are still in the works. Some did not appear to have any benefit. There's supposed to be a regimen H coming soon, but the details are still scant. So we're going to be looking for another group of patients to get involved in being a part of these trials where we're testing out new medications to see if we can alter the trajectory of the disease.

Glen Stevens, DO, PhD: I don't know how it is in your field, but in the brain tumor field where we suffer a lot of the similar problems with our most aggressive tumors, if you go to the NCCN guidelines, National Cancer Center guidelines, the number one recommendation is patients should go on a clinical trial. Is that the case in ALS patients? Should they go on a clinical trial?

Rebecca Kuenzler, MD: I think it's a wonderful thing to be able to contribute to science and be a part of a clinical trial. It's definitely a commitment, and that commitment gets more challenging as the sort of medical ills of a patient continue to pile up. But I think that it's really a beautiful thing to be able to contribute to the science and the understanding of what's going on with this really horrible disease. And so as much as folks are able to get involved in clinical trials, we absolutely encourage it.

Glen Stevens, DO, PhD: And where's the best place to look for that?

Rebecca Kuenzler, MD: There are a number of different places you can look. One place that you can look is a NIH-sponsored clinicaltrials.gov website. There's actually one that's specific to ALS. There's a website called I am ALS, and they have a clinical trials navigator on there where you can really... they have a nice map where you can look at different locations or you can filter it by different genetic mutations or if there's a certain medication that you've heard about, you can filter it based on that. So you can really look for something that is tailored to what you would be interested in. So that can be a helpful resource for patients and providers.

Glen Stevens, DO, PhD: Anything that we haven't covered that you feel is important for our listeners?

Rebecca Kuenzler, MD: This is a hard disease, and we want to have hope, but we have to have reasonable hope. And so we are going to continue to support patients with the options that we currently have available and the team that we have that's here to try to answer their needs as much as possible. And we just need to keep up the effort to work on finding a way to stop this disease.

Glen Stevens, DO, PhD: So Rebecca, thanks for all your insights and thoughts in terms of where ALS is today, and look forward to seeing you back in the future with updates on some of the clinical trials.

Rebecca Kuenzler, MD: Absolutely. Thank you for having me.

Closing: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website. That's @CleClinicMD, all one word. And thank you for listening.