Dr. Sabrina Paganoni, Massachusetts General Hospital, will discuss CENTAUR, a new trial for people with ALS. CENTAUR ("Combination of Phenylbutyrate and Tauroursodeoxycholic Acid") is a Phase 2 trial that will test the efficacy and safety of AMX0035 for the treatment of ALS. It will also test the impact of AMX0035 on several disease biomarker and provide insights into ALS disease biology. CENTAUR will enroll 132 participants nationwide.
In partnership with The ALS Association, NEALS offers live webinars for people with ALS, caregivers and the broader ALS community. Topics include updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments. Our webinars also offer participants the opportunity to ask questions directly of the experts running clinical trials and conducting research activities.
Many people with ALS will use powered mobility during their disease course. There are numerous powered mobility bases and hundreds of components and accessories to select from. Sara Feldman, PT, DPT, ATP, Temple University, will discuss the basics of power wheelchairs including the different types of bases and components. She will identify the most commonly utilized power features and accessories and the benefits and functions of each.
Speakers: Jeremy Shefner, MD, PhD, Barrow Neurological Institute and Seward Rutkove, MD, Harvard Medical School
ALS AT HOME is a new kind of research study that follows ALS disease progression and collects data on a number of different outcome measures. This study is unique in the fact that it allows patients with ALS to participant in research from home-equipment is shipped directly to participants' homes, and they are able to take outcome measures on their own and send data in over the internet. ALS AT HOME will enroll 250 participants nationwide, with all study procedures being performed remotely.
Amyotrophic lateral sclerosis (ALS) is thought to be a disease with a genetic predisposition and environmental triggers. Elijah Stommel, MD, PhD (Geisel School of Medicine at Dartmouth) will discuss some potential important environmental risk factors for ALS and some of the relevant research he and his colleagues have been involved with.
On 16 May 2014, a news story appeared on American television and online, highlighting dramatic improvements in a patient with ALS taking a nutritional supplement called lunasin. This webinar will review how ALSUntangled investigated this story and eventually graded lunasin with regard to its table of evidence system. It will show how lunasin was then incorporated into a patient-centric pilot trial within the "replication of ALS reversals" program. The final results of this pilot trial will be presented. Finally, it will review other theories that might explain ALS reversals, show preliminary results from experiments testing these theories, and describe our next steps.
Speaker: Sherry Kolodziejczak, MS, OTR/L, Crestwood Medical Center
This presentation will review the documentation requirements for power wheelchair evaluation. The Medicare Power Wheelchair form will be reviewed in a line-by-line basis teaching the required documentation requirements. Required documentation areas also discussed include the Physician Face-to-Face Exam, the 7 element order, the therapist Specialty Examination, and the detailed product description/letter of medical necessity. When proper submission of the power wheelchair evaluation documentation follows the 9 step Algorithm, approval and delivery of power wheelchair to the client is assured.