Location: Naarden, The Netherlands
The fourth ENMC workshop dealing with the periodic paralyses was held on 23rd and 24th March 2001 in Naarden, The Netherlands, as a follow up to the November 2000 87th meeting previously reported. It was attended by 8 active participants from Germany, Italy, the Netherlands, the United Kingdom and the USA, with representations in absentia from French participants. This workshop concentrated on the detail of the protocols for the previously proposed multi-centre trials for periodic paralysis. It also reviewed the progress of the various working parties that have been set up to cover different aspects of the proposed trials. Progress in the development of new outcome measures required for the trial was discussed. These include assessment of the reliability of neurophysiological studies in periodic paralysis, quantitative measures for myotonia that would be associated with some hyperkalaemic periodic paralyses and the soon to be completed UK validation of a muscle disease specific individualised quality of life measure. The detailed amendments of the protocol for the principal proposed multi-centre trial; a head to head comparison of dichlorphenamide versus acetazolamide were broadly agreed and will be distributed to the wider group for approval. Further protocol development for trials of novel treatments was discussed. Strategies for obtaining trial funding were also discussed
An extended report of the meeting will be submitted for publication in Neuromuscular Disorders.
Dr. Michael Rose (United Kingdom)