127th ENMC International Workshop: implementation of a European registry of ALS. Naarden, The Netherlands, 8-10 October 2004.

摘要

The aim of the meeting was to establish a database for the prospective collection of epidemiological information on patients diagnosed with ALS in Europe. In other words, the establishment of a pan European ALS register. The data collection will be performed pursuing two major objectives: 1. To recruit a large population-based sample of patients with ALS. This will be achieved by merging the information collected by the existing national and regional registries from Italy, Ireland, England, and Scotland; 2. To collect baseline information on newly diagnosed patients from Spam, Serbia, and other countries where population-based registries are not yet available. This data will be utilized in recruiting for parallel studies and therapeutic trials.Amyotrophic lateral sclerosis (ALS) is a rare neurological condition (overall annual incidence rate in Europe 0.4-2.5 per 100,000) [1-7] with severe prognosis and death within 3-5 years from diagnosis [8-10]. Several community studies have been performed to studythe incidence and characteristics of ALS in Europe. These include surveys from well-defined populations [4-7] and studies from population-based regional and national registries .