CReATe Podcast

Dr. Caroline McHutchison is a Neuropsychologist and CReATe Clinical Research Scholar at the University of Edinburgh and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Temporal course of cognitive and behavioural changes in motor neuron diseases”.

Dr. Chad Heatwole is a Professor of Neurology and the Director of the Center for Health and Technology at the University of Rochester Medical Center and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “The amyotrophic lateral sclerosis-health index (ALS-HI): development and evaluation of a novel outcome measure” and its role as a patient reported outcome measure for ALS.

Sodium chlorite is an experimental drug targeting macrophage activation. It exists in different formulations. An oral formulation has potentially deadly side effects. An IV formulation called NP001 has been in recent trials targeting a subset of people with ALS. Here we review the interesting development of this product and where we expect that to go in the near future.

Rituximab is an intravenous product that reduces B lymphocytes. It can help improve strength in patients with myasthenia gravis and multi-focal motor neuropathy, neuromuscular diseases that are caused by circulating antibodies made by B lymphocytes. In this podcast we examine the possible use of rituximab to treat patients with ALS

Ozone is an oxidizing agent which has some surprisingly plausible mechanisms by which it could influence ALS progression. It can also be dangerous. The FDA has warned against using it as a treatment for any disease. Further studies are needed to determine whether there is any dose or route of administration that might be safe and effective for use in people with ALS.

Astaxanthin is a naturally occurring chemical which has plausible mechanisms for treating ALS and appears reasonably safe and well tolerated in non-ALS trials. We look forward to ALS-specific trials planned later this year which should shed important light on whether this is specifically safe for people with ALS, and whether it really can slow ALS progression.

Dr. Martin Turner is a Professor of Clinical Neurology & Neurosciences at the University of Oxford and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Neurofilament light chain in drug development for amyotrophic lateral sclerosis: a critical appraisal”, and the potential role of NfL as a biomarker for ALS. This is part I of a two part series.

Dr. Martin Turner is a Professor of Clinical Neurology & Neurosciences at the University of Oxford and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Neurofilament light chain in drug development for amyotrophic lateral sclerosis: a critical appraisal”, and the potential role of NfL as a biomarker for ALS. This is part II of a two part series.

There is a theorized association between mycobacteria and ALS, and two published case reports described improvements in ALS-like conditions (both with atypical features) after treatment with antimycobacterial antibiotics. Here we review these in detail and discuss our thoughts on how they might change our approach in certain patients in the future.

Corticosteroids are a class of medications with well-studied effects on the immune system and some people living with ALS have reported benefits from them online. Here we review the pre-clinical and clinical data. We conclude that there is currently no clear evidence that steroids can slow ALS progression, and they can have many side effects.

Butyrates have plausible mechanisms for slowing ALS progression and positive pre-clinical studies. One trial suggests that sodium phenylbutyrate (NaPB) in combination with Tauroursodeoxycholic acid (TUDCA) can slow ALS progression and prolong survival, but the specific contribution of NaPB toward this effect is unclear. Butyrates appear reasonably safe for use in humans. Based on the above information, we support a trial of a butyrate in PALS, but we cannot yet recommend one as a treatment.

Methylcobalamin is a specific precursor to B12 (cobalamin). It has promising mechanisms by which it could slow ALS progression. Two trials done in Japan suggest that 50mg via intramuscular injection twice weekly can slow ALS progression and prolong survival. Here we discuss the evidence for ultra-high dose methylcobalamin in patients with ALS and conclude that it may offer benefit, but only if administered within the first year of symptoms. If started after the first year, there is no evidence of benefit. It appears reasonably safe.

Dr. Jim Caress is a Professor of Neurology at Wake Forest University and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication titled “Harnessing the power of the electronic health record for ALS research and quality improvement: CReATe CAPTURE-ALS and the ALS Toolkit”.

Dr. Mary-Louise Rogers is an Associate Professor at the College of Medicine and Public Health at Flinders University and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication titled “Urinary neopterin: A novel biomarker of disease progression in amyotrophic lateral sclerosis,” which discusses the importance of biomarkers in ALS.

Dr. Marc Weisskopf is the Cecil K. and Philip Drinker Professor of Environmental Epidemiology and Physiology at Harvard T. H. Chan School of Public Health. In this interview, he discusses his recent publication titled “Occupational lead exposure and survival with amyotrophic lateral sclerosis,” which discusses the role that environmental risk factors could play in ALS.

Dr. Melissa Nel is a Research Fellow, and Dr. Jeannine Heckmann a Professor of Neurology, both at the University of Cape Town in South Africa. In this interview, they discuss their recent publication titled “Revealing the Mutational Spectrum in South Africans with Amyotrophic Lateral Sclerosis” which highlights that ALS patients of African genetic ancestry should be included in large-scale ALS gene discovery efforts.

Vitamin C is a very popular supplement in people living with ALS, perhaps due to its antioxidant mechanism, low cost, and low risk. Here we review the data on Vitamin C in ALS in hopes of helping patients make more informed decisions about it.

Melatonin is a naturally occurring hormone, and it is commonly taken as a supplement to induce sleep. Here we review some surprising mechanisms, pre-clinical data and case reports supporting its potential as an ALS treatment.

Light therapy has surprisingly plausible mechanisms through which it could influence the progression of ALS. Here we describe these, as well as some limited pre-clinical and clinical data, and information about dosing, risks, and costs.

Ketogenic diets, resulting in the formation of ketone bodies, have long been used to promote weight loss and to treat refractory epilepsy. Here we summarize the available data on ketogenic diets as a treatment for ALS.