A Motor Neurone Gene Therapy that Works!

[EvelynMW]

Guy Can people still be accepted?

[Ellie]

EvelynMW Recruitment was due to close last November, but Covid may have disrupted things, so it's definitely worth asking your neurologist and/or the 3 test centres listed.

This is the trial, Evelyn, with inclusion/exclusion criteria: http://www.mndcsg.org.uk/mnd-clinica...c9orf72-trial/

[EvelynMW]

Ellie Looks very similar to the one that rejected me.

[Ellie]

Don't take it personally Evelyn! At least we won't reject you 😘

[Guy]

I would expect the C9orf trial will run like the similar SOD1 trial. If so, recruitment will be active before each ascending dose. At present they're probably only on the first, and lowest, dose. As Ellie says try to get your name on the list at the centres as it's likely to be on a first come, first served basis. After the initial trial period for SOD1, Biogen opened an extension trial for all participants with no placebo and maximum safe dose being used.

[LindaB]

Had my 1st follow up consultant consultation post diagnosis today and gene therapy trials mentioned...so I assume they're still looking for participants.