Vienna, 12-13 October 2018: First recommendation meeting of the EAN ALS guideline panel.
ALS is a disease with a very high unmet medical need. There are only limited options for disease-modifying pharmacotherapy. The cornerstone of the management remains multidisciplinary care, with nutritional and ventilatory support and symptomatic treatments for disabling symptoms. Although several interventions are effective, there is a large degree of variation across Europe in the the care for ALS patients. Guidelines for the management of ALS are therefore being developed by the EAN guideline panel for ALS. The previous European ALS guideline dates back to 2011 and was coordinated by Peter Andersen (Umea University, Sweden).
The current effort will result in the first EAN ALS guidelines and will focus on the management of patients with ALS. The GRADE methodology is being used and the guideline development is in close collaboration with Cochrane. The ALS guideline panel consists of expert neurologists from different European countries (Philip Van Damme for Belgium, François Salachas and Philippe Couratier for France, Albert Ludolph and Susanne Petri for Germany, Orla Hardiman for Ireland, Adriano Chio and Vincenzo Silani for Italy, Leonard van den Berg for The Netherlands, Ole-Bjorn Tysnes for Norway, Magdalena Kuzma for Poland, Mamede De Carvalho for Portugal, Jesus Mora for Spain, Peter Andersen for Sweden, Markus Weber for Switzerland, Ammar Al-Chalabi and Chris McDermott for UK) and is supported by Gemma Villanueva and Katrin Probyn from Cochrane.
The guideline will deal with 21 research questions. For all topics the available evidence will be searched, summarized and rated for quality. The recommendations will be made using GRADE methodology. During the first recommendation meeting, held in Vienna at the EAN headquarters, the available evidence for all research questions was reviewed. For about 6 of the questions the recommendations can already be finalized, whilst for the other questions new searches and updates of systematic reviews will be required. A second recommendation meeting will be planned in 2019 after which the guideline will be finalized.
by Philip Van Damme