31 August 2023 Research
We have remained in contact with the MIROCALS trial leads, this week, and continue to urge them to publish the data as soon as it is available. They have heard us and assured us this will happen, but are unable, at the moment, to share when that will be. Their focus remains on delivering a robust set of data which will stand up to scrutiny by peers and regulators.
We have also sought further information from other leading neurologists to help us understand where next to prioritise our efforts so we can maximise our impact and support for people with MND. We are also having great conversations with other charities which have been in the position we find ourselves in right now, with potentially promising medicines emerging, so we can learn from them and share valuable experience.
As mentioned previously, we’ve collated a submission to NHS England’s Drug Repurposing Scheme, asking for consideration for the repurposing of Proleukin.
The Scheme is a process which identifies and develops opportunities to use existing medicines in new ways. Proleukin is currently used as a treatment for kidney cancer that has spread to another part of the body. It was used in the MIROCALS trial to test if it slowed the progression of MND.
We are grateful to the small group of patients who provided supporting information for the application. We will submit the form on Monday when we have received the final supporting document from one of our lead neurologists - everything else is ready to go. NHS England has indicated they will share a timeline for a response once they have received the application.
As you know from a previous update, we have sought legal advice regarding our role as the MND Association within the MIROCALS consortium. The agreement was signed in 2015 and, as many of the leadership and Board have changed since then, we want to be completely clear what our role is, which areas of work we are responsible for and, just as importantly, the activities and decisions which sit outside our remit. We expect to be able to share the outcome of those discussions very shortly. And of course, the results of these discussions have no bearing on our desire to push for the publication of data at the earliest opportunity, which we will continue to do.
Tanya Curry, Chief Executive