The 5th Symposium on ATP1A3 will take place August 24-26th at the Institute of Neurology in London, and the organizing committee could use your help! The committee is requesting videos of AHC events for review during the symposium.
A video and clinical panel session on the morning of August 25th is billed as follows:
What are the clinical events in ATP1A3-related disease? aims to discuss:
- events that are seizures confirmed on EEG recording
- events that are hemiplegic episodes
- events that are undiagnosed
There will be a panel of experts to assist in developing the discussion and interpretation, and the intended outcome is a set of community-supported consensus definitions of events in AHC, which are essential to ensure all researchers are using the same language and interpreting terminology in the same way, and will be central for trials of new therapies. Consensus definitions are to be published as a statement from the AHC community.
From the committee:
In order to make this happen, we need to have videos of events for the panel and attendees to jointly review during the session. Ideally, these events would include those each provider thinks are typical ‘hemiplegic episodes’ (unilateral or bilateral), ‘seizures’, other paroxysmal events, or undiagnosed events, from both mouse models and humans. Ideally, there would be concomitant EEG recording, but we understand this will not always be possible. All video material will need to have been consented for sharing at such a meeting, and ideally also for inclusion in any possible publication that emerges.
We now ask if you can provide such material, with confirmation of its permissions for sharing at such meetings, and whether or not consent extends to publication in the medical literature. We would ask that such material is sent in advance, so that it can be collated and grouped in advance and so that presentation can be smooth, and not hampered by incompatible formats, the need to change computers etc.
To avoid inundating the organizing team with emails and video uploads and DVDs, if you are interested in participating, please contact our Family Support Chair, Stacie Confair-Stringer at firstname.lastname@example.org