Access to emerging treatments - collaborative statement

For the first time there is a realistic possibility of new treatments for motor neuron disease (MND) emerging over the coming years.

As the three main UK MND charities - My Name’5 Doddie Foundation, The MND Association, and MND Scotland - naturally we are all focused on getting proven treatments to people with MND as soon as practically possible. The best and most efficient way to do that is to work together, combining knowledge, expertise and our voices.

As we enter the new year, our priority activities are:

• Build a comprehensive database of new medicines and repurposed drugs currently being researched in clinical trials
• Share our database with and provide regular updates to regulators, healthcare providers, other Government agencies and relevant charity coalitions
• Continue to work with clinicians and healthcare providers to best prepare for the expedient uptake of new and/or repurposed medicines (eg tofersen, interleukin-2) once there is sufficient evidence of efficacy and safety
• Ensure people with MND are at the heart of regulatory and approval processes (for example health technology appraisals) when decisions are made about the value and affordability of new medicines by building collaborative relationships with stakeholders
• Collaborate with people with MND, neurologists, Health Technology Appraisal experts and others to ensure our work is informed and credible

A successful outcome of this work will be timely and equitable access to proven and effective treatments for people living with MND.

We are driven by this joint ambition, and by sharing knowledge, expertise and resources we hope to accelerate our progress.

We will jointly share our activities with the MND community.