Neuro-SysMed seminar – ALS
Welcome to the Neuro-SysMed monthly seminar series! This time topic will be on ALS. Join us at the auditorium in Bikuben at 11:30 - 13:00 (lunch from 11:30 - 12:00).
Welcome to the Neuro-SysMed seminar series! Open to all, just remember to register.
Speaker: Ole-Bjørn Tysnes, Neuro-SysMed PI on the ALS field, senior consultant neurologist at the Department of Neurology, Haukeland University Hospital, and Professor at the University of Bergen.
Title: The NO-ALS study: the first Norwegian experimental treatment study against ALS
Place: The auditorium in Bikuben, Jonas Lies vei 69 (campus Haukeland University Hospital)
Time: Wednesday March 22 at 11:30 - 13:00 (lunch from 11:30 - 12:00).
Registration: at this link
Lecture language: English
Abstract: ALS has an annual incidence of 2-3 per 100,000. The disease is slightly more frequent in men than in women. Average survival from time of diagnosis is three years. There is no effective treatment. Riluzole has been available for a number of years but has very limited efficacy. There is therefore a great need for more effective treatment.
In 2020, the first patients were included in the NO-ALS study. This is a double-blinded randomized study in which patients are recruited from all over Norway. Motor neurons are energy-demanding cells. Mitochondrial failure has been demonstrated in these cells. In the NO-ALS study, treatment with Nicotinamide Riboside and Pterostilbene is attempted. The purpose is to try to increase mitochondrial access to NAD and thereby increase energy access to failing motor neurons.
Currently, almost 200 patients are included in the study, which runs over one year. The functional scale ALSFRS-R is the primary endpoint. There have been no serious side effects. The study has two arms, one for newly diagnosed patients and one for patients who have either had ALS over several years or who experience a slow development of symptoms.
It has been challenging to conduct a placebo-controlled ALS study. Many patients find it unreasonable to be at risk for receiving a placebo. Long travel distances to some of the study centres are also challenging. Over the course of one year, many patients become too ill to be followed up clinically at the study site. Based on this, the number of study centres has been expanded. The first results from the study will most likely be available within two years.