Amyotrophic lateral sclerosis (ALS) is a rare disease characterized by the impairment of spinal and/or bulbar muscle function. The cause is the degeneration of motor neurons, also known as motoneurons. It is a chronic condition, fatal in most cases within an average period of 3-5 years from onset.
È una patologia cronica, a decorso fatale nella maggior parte dei casi entro un periodo medio di 3-5 anni dall’esordio.
The Lombardy ALS Registry (SLALOM) was established in 1997 with the primary goal of collecting data in an organized multicenter structure on all Lombard patients diagnosed with ALS from 1998 to 2002. The SLALOM registry is part of the EURALS network – “EURopean ALS Epidemiology Consortium” – created in 2004 by representatives of the main European ALS registries (Italy, Scotland, Ireland, and England), with the aim of addressing important questions on the epidemiology of ALS, including incidence, male/female ratio, frequency of familial ALS, risk factors, etc. Currently, the SLALOM registry includes 28 centers in Lombardy that manage ALS patients and their caregivers.
To collect data for:
• Conducting incidence studies;
• Producing data on risk factors and the prognosis of the disease;
• Supporting scientific research to improve knowledge on the causes and treatments of the disease.
To collaborate with the SLALOM registry, obtain information, or propose collaborations for scientific studies, please contact Dr. Elisabetta Pupillo by writing to sla@marionegri.it or by calling the switchboard of the Mario Negri Institute at 02-390141.
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