ALS (Amyotrophic Lateral Sclerosis )

Key Researchers

Samuel Maiser, MD, is the Medical Director of the ALS Center of Excellence at Hennepin County Medical Center where he is also a staff neurologist and palliative medicine physician. He is also an Assistant Professor of Neurology at the University of Minnesota. He attended medical school and completed a fellowship in clinical neurophysiology at the University of Minnesota. He also completed a fellowship in palliative medicine at the Medical College of Wisconsin. Dr. Maiser is board certified in neurology, clinical neurophysiology, and palliative medicine.

 

 

Nathan Sit, MD, is a neurologist at the ALS Center of Excellence at Hennepin County Medical Center where he is also a staff neurologist.  He attended medical school and completed a fellowship in neuromuscular medicine at the University of Minnesota. He is certified by the American Board of Psychiatry and Neurology.

 


Current Research

The following studies often allow ALS patients access to the newest therapies that are available only in a research setting:

Amylyx: This is a phase II, multicenter, randomized, double-blind, placebo-controlled study evaluating the safety, tolerability, efficacy, pharmacokinetics and biological activity of AMX0035 (a combination of TUDCA and phenylbutyrate). The medication comes in powder form that the patient mixes with water and takes orally twice a day. Treatment is for 24 weeks. For more information about this study please contact Cherie Martinson, Research Coordinator, at cherie.martinson@hcmed.org or 612-873-5462.

CY 5022: This drug treatment study is for symptom management (as opposed to disease treatment). CK-2127107 is intended to improve function of skeletal muscles, including respiratory muscles. The primary item being assessed is the effect of drug vs. placebo on respiratory function. Treatment is for 12 weeks so this is a relatively short trial. For more information about this study please contact Cherie Martinson, Research Coordinator, at cherie.martinson@hcmed.org or 612-873-5462.

 Create PGB Study: This study will prospectively collect data on approximately 700 patients with amyotrophic lateral sclerosis (ALS) or a related neurodegenerative disorder such as ALS-frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), progressive muscular atrophy (PMA), and multisystem proteinopathy (MSP). The goals of this study are threefold. The first is to better understand the genetic contribution to ALS and related neurodegenerative disorders. The second is to prepare for a future of clinical trials in which potential treatments will be tested in patients who share certain characteristics such as a specific genetic cause of disease. The third is to develop biological markers that will aid testing of novel therapeutics. All enrolled patients will undergo five in-person evaluations at one of the CReATe consortium clinical sites as well as annual remote evaluations. In-person evaluations will include motor, cognitive and functional assessments as well as collection of biological fluids. Family members of patients with apparently sporadic disease (i.e. no family history) may also participate through a remote-evaluation process in which they provide limited information about their medical history as well as biological samples (blood and urine). For more information about this study please contact Cherie Martinson, Research Coordinator, at cherie.martinson@hcmed.org or 612-873-5462.

 

Twin Cities ALS Research Consortium: The Hennepin County Medical Center ALS Center of Excellence collaborates in research with other local clinics including the University of Minnesota. This consortium may provide access to additional ALS related research studies.

 

Suggested Links*

ALS Association:  http://webmn.alsa.org/site/PageServer?pagename=MN_homepage

NIH Clinical Trials:  https://clinicaltrials.gov/

Northeast ALS Consortium: https://www.neals.org/

 

*HHRI is not responsible for the content on external websites. The appearance of these links on the HHRI website does not constitute an endorsement by HHRI.