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Death is the definitive hallmark of Amyotrophic Lateral Sclerosis (ALS) and still the primary endpoint in most treatment study. Despite its importance limited data are available about the definitive causes of death in ALS nowadays. Previous autopsy studies pointed out that defining the cause of death based solely on a clinical examination is not a reliable method to reveal the true cause of death in ALS. It is unclear if treatments such as non-invasive ventilation (NIV) or percutaneous gastrostomy (PEG) have an impact on the cause of death. Seventy of our ALS patients had a complete macroscopic and microscopic post mortem analysis between 2003 and 2014. Viscera for the pathological causes of death and for relevant concomitant diseases were additionally studied.
Aim of the study is to obtain causes of death, effects of therapeutical interventions on survival and causes of death and to build a biobank for further neuropathological examinations.