In these very difficult and uncertain time for us all in the Duchenne community, we want to reassure you that we are doing everything we can to stay on top of the situation as it develops.
Clinical Trial Update
We have been told by hospitals running DMD clinical trials that each trial is being dealt with on a case-by-case basis, with sponsors and sites looking at protocols to establish what can be done to continue trials without the need for patient contact, including home delivery of medication and remote consultations.
Given the current pressures on NHS staff and the continuously evolving situation, it would be hard for sites to keep us updated with the latest developments, so we would suggest, if you are currently on a trial and have a particular question regarding the trial, to get in touch with the neuromuscular centre where you are receiving the treatment directly. However please note that sites will be getting in touch with you directly to discuss how the clinical trial is affected at that site.
All trials currently listed as 'recruiting' on the Clinical Trial Finder will most likely be subject to some restrictions. As such, if there is a trial you are interested in taking part in, please contact the trial sites directly, as they will have more information about what restrictions have been placed on recruitment. We will only update the Clinical Trial Finder if a study is fully recruited or terminated.
We will discuss the impact of coronavirus (COVID-19) on clinical trials during our next Duchenne community webinar this Wednesday 1st of April at 2pm. Dr Michela Guglieri, from the John Walton Muscular Dystrophy Research Centre in Newcastle, will join this discussion.
You can register for the webinar here:
https://zoom.us/webinar/register/WN_EqLerZDTQhKJ-E1J3W6raA
You can also watch a recording of our first community webinar here.
Thank you to DMD Hub staff
We would like to send a thank you to our DMD Hub staff at DMD Hub hospital sites all around the country. We know they are being impacted by coronavirus and that they are all working really hard to support the DMD Hub, as well as the wider NHS, during this national emergency.
Useful resources:
This is a moment of national emergency: stay at home, protect yourselves and others, and save lives.
Please keep in touch support@duchenneuk.org