Problems in shortening the time to confirmation of ALS diagnosis: lessons from the 1st Consensus Conference, Chicago, May 1998

The 2nd Consensus Conference (Versailles) on the early diagnosis of amyotrophic lateral sclerosis (ALS) developed themes identified at the 1st Consensus Conference (Chicago) on defining optimal management in ALS. These themes included describing the problems and limitations in current diagnostic practices, identifying consequences of early diagnosis on patient management, establishing recommendations to help healthcare personnel achieve the early diagnosis and proposing solutions to facilitate early diagnosis of ALS. Lessons from the ISIS Survey and the 1st Consensus Conference focused on the variability of the first-contact physician, supply factors for specialists and variability of application of medical techniques. The recently introduced concept of 'ALS health states or stages' was reviewed in terms of ongoing and potential prospective studies. The relative contribution of neuroimaging or clinical neurophysiological investigations to accelerating the diagnosis of ALS in clinical practice was debated. The role of a common ALS knowledge-base among patients, initial healthcare providers, diagnosing neurologists and confirming neurologists was critically appraised with regard to simplified 'ALS diagnostic algorithm', 'ten aphorisms in the diagnosis of ALS' and 'ALS axioms of referral'. Refining this ALS knowledge-base is required to identify a minimum dataset required for the evaluation and diagnosis of ALS.