25th March 2018
A very good couple of days spent this weekend talking about how the European Patient Advisory Group can assist in raising awareness of clinical trials for the Rest-On trial.
https://www.narcolepsy.org.uk/resources/clinical-trial-single-dose-sodium-oxybate
Our Chair, Matt O’Neill, was instrumental in pulling this group together and encouraging Patient Organisations across Europe to work together with the aim of both raising awareness of trials & achieving earlier access to new medicine. Working together, joined by a team from Avadel and Dr. Tom Roth & Prof. Yves Dauvilliers (who Chair the USA & European Groups respectively) has the advantage of active participation & steering from real patients.
Any UK patients who are interested in taking part in this trial should follow the link above to Narcolepsy UK & the trial website. Trial specific questions should be addressed to Avadel or your clinician. For more practical advice on things to consider when on a trial, we have spent a large part of the weekend collating additional Frequently Asked Questions (FAQs) which will be added to the trial website.
In addition, we are hoping to be able to announce additional trial sites across the U.K., potentially creating easier access for more patients.
