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 amyotro phic lateral sclerosis (ALS) developed themes identified at the 1st Consens us Conference (Chicago) on defining optimal management in ALS. These themes included describing the problems and limitations in current diagnostic pra ctices, 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. Le ssons from the ISIS Survey and the ist Consensus Conference focused on the: variability of the: first-contact physician, supply factors for specialist s and variability of application of medical techniques. The recently introd uced concept of 'ALS health states or stages' was reviewed in terms of ongo ing and potential prospective studies. The relative contribution of neuroim aging or clinical neurophysiological investigations to accelerating the dia gnosis of ALS in clinical practice was debated. The role of a common ALS kn owledge-base among patients, initial healthcare providers, diagnosing neuro logists 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 requ ired to identify a minimum dataset required for the evaluation and diagnosi s of ALS.