by Philip Van Damme
In March 2024, the EAN published a new guideline on the management of amyotrophic lateral sclerosis (ALS) in the European Journal of Neurology, in collaboration with the European Reference Network for Neuromuscular Diseases (ERN EURO-NMD).
We trust that this guideline will be of considerable interest to all those engaged in the care of individuals living with ALS. It comprehensively addresses pivotal aspects of ALS management, spanning from pharmacotherapies to non-pharmacological interventions, holistic care, and psychological support. As such, it serves as a valuable resource for all those involved in the care of people with ALS.
This guideline represents a significant update to the EFNS guideline on ALS management, originally published in 2012, and stands as the first EAN guideline on ALS. The development of this guideline took several years, during which our working group had the privilege of collaborating with Cochrane Response for evaluation of the available evidence. Numerous stakeholders contributed to this endeavour, including key opinion leaders from various European nations, systematic reviewers from Cochrane Response, patient representatives from EUpALS, as well as stakeholders from the EAN, ERN EURO-NMD, and ENCALS.
The scope of this guideline is comprehensive, encompassing not only disease-modifying therapies but also multidisciplinary care, symptomatic treatments, and end-of-life care. It notably incorporates emerging therapies not yet available in Europe but approved by the FDA. While offering recommendations on therapies in development presented challenges, we relied on the available evidence, recognising the need for ongoing updates in the future.
Multidisciplinary care remains the cornerstone of ALS management, and significant effort was dedicated to updating various facets of this approach. Although the process was extensive, we are gratified by the outcomes and anticipate that it will prove invaluable to all healthcare professionals involved in the treatment and care of ALS patients.
Read the full paper here and check out our infographic below:
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