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Clinical studies and stratification on ALS

ALS-noden

The ALS Node conducts cutting-edge clinical research on ALS with the aim to improve the diagnosis, treatment options, and care of individuals with ALS.

Node leader: Ole-Bjørn Tysnes

Ole-Bjørn Tysnes is a consultant neurologist at the Department of Neurology at Haukeland University Hospital, and professor of neurology at the University of Bergen. He has for many years focused on research in ALS and Parkinson’s disease and is PI of the ongoing ALS studies at Neuro-SysMed.

The ALS node conducts clinical and molecular research with the aim to improve the diagnosis, treatment, and quality of life of individuals with ALS.

Node activities

Translational and clinical research from our PD Node and other groups has nominated NAD-replenishment therapy as a potential neuroprotective intervention
across neurodegenerative diseases. Moreover, one small study suggested that the combination of NR and pterostilbene (a sirtuin activator), may have added benefit in patients with ALS (PMID: 30668199). Encouraged by this evidence, the ALS Node conducts clinical trials to determine whether combination therapy of NR and pterostilbene may inhibit neurodegeneration and increase survival and quality of life in patients with ALS. Another area the ALS Node is particularly active in is evaluating the effect of life-prolonging interventions, such as mechanical ventilation, on the quality of life of patients and their informal caregivers. Finally, the ALS Node conducts research aiming to improve the diagnosis and tailored treatment opportunities for patients.

During 2023, the ALS node made substantial advances in their clinical research projects, which include five clinical trials, including one industry-sponsored trial, and one prospective cohort study.

  • The NO-ALS study is a phase-II randomised, doubleblind, multicentre clinical trial, with the primary objective to assess the efficacy of NR as a neuroprotective therapy, delaying the rate of neurodegeneration and clinical disease progression and increasing patient survival in ALS.
  • The NO-ALS extension study is a phase-II open label, multicentre clinical trial, with the primary objective of assessing the long-term safety of NR therapy in ALS, actively recruiting patients who have completed the NO-ALS study.
  • The LTMV study aims at studying the effects of longterm ventilation support in ALS patients on quality of life in patients and their families.
  • STRAT-ALS: The ALS Node is carrying out a stratification study in ALS (STRAT-ALS), recording detailed clinical data and collecting biological materials including autopsies from ALS patients and controls.

Selected publications from 2023:

  1. Olsen CG, Busk ØL, Holla ØL, Tveten K, Holmøy T, Tysnes OB, Høyer H. Genetic overlap between ALS and other neurodegenerative or neuromuscular disorders. Amyotroph Lateral Scler Frontotemporal Degener 2023 Oct 17:1-11. doi: 10.1080/21678421.2023.2270705. Online ahead of print.
  2. Taule T, Eide IS, Fjær L, Myrberget MA, Oseland MS, Renså MA, Revheim T, Tysnes OB, Aßmus J, Rekand T. Norwegian version of the Edinburgh cognitive and behavioural ALS screen: Construct validity, internal consistency, inter-rater, and test-retest reliability. PLoS One. 2023 May 4;18(5):e0285307. doi: 10.1371/ journal.pone.0285307. eCollection 2023.PMID: 37141321
Last updated 11/29/2024