Guest blog: My thoughts on MND-SMART announcement

Alan Gray, who previously shared his MND story in June 2018 gives his thoughts on the MND-SMART announcement.

– by Alan Gray

Like most people living with MND, I was devastated when initially given my diagnosis and prognosis. With average life expectancy of three years, and no viable treatment plan it is very challenging to maintain a positive outlook. This announcement represents a major milestone for people living with MND throughout Scotland and the rest of the UK, it gives us much needed hope and belief that a cure will be found. Firstly, by participating in the trial we can play an active role in the search for a cure. Secondly, we may have the opportunity to receive neuroprotective drug treatments that have the potential to slow down or stop the progression of the disease.

This announcement will also provide a significant boost to the army of fundraisers who raise money for the various MND charities and research organizations. They will see that their efforts are making a difference, and that the funds raised are translating into tangible actions. I’d personally like to thank all of my family and friends who have walked, ran, cycled, sang, modelled, Sky dived and donated money over the past two years, collectively they’ve raised over £16K for MND Scotland.

The MND-SMART trial has a number of innovative features. It is multi-arm and adaptive, this means that multiple active drugs will be tested at the same time resulting in a faster learning process. The adaptive element of the trial design enables newly discovered or promising treatments to be added at a later date. Participants will be randomly assigned an active drug or a placebo, not ideal but I fully understand that placebos are a fundamental part of clinical trials.

People living with MND will also be reassured to know that the trial design team made participant and carer input central to the development process. This was achieved by having regular reviews with a small panel of people living with MND and a number of carers.

This has resulted in many beneficial features for participants:

Easy to understand brochures and quick fact documents accompany the necessary detailed participation information sheets
The participant eligibility criteria has been made as wide as possible, increasing the likelihood that volunteers will be accepted into the trial
The drugs will be couriered to participant homes, minimizing the effort required to obtain the drugs
Drugs will be supplied in liquid form, so that participants with swallowing challenges are also able to take part in the trial
After an initial eligibility/screening meeting, follow up review meetings will be conducted via secure video call where possible, thus minimizing the need to travel

I was lucky enough to attend the final trial planning meeting at the end of 2019, and it was clear that this announcement is the result of many years of fundraising, hard work and collaboration by the Research organisations and the MND charities.

I believe that this announcement will be a significant source of hope and strength for people living with MND. What a great way to start the new decade!

To register your interest in taking part in the trial go to www.MND-SMART.org or speak to your MND care team.