The hidden side of clinical trials

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Getting involved in Clinical Trials

Steve Isaac

Steve Isaac, who is living with motor neurone disease (MND), is taking part in the diaphragm pacing trial at Oxford MND Care Centre.

What is it like to take part in this clinical trial of diaphragm pacing?

“Very normal. I'm not really aware I'm part of a trial, there are a couple more visits to the care centre at the beginning, but now the only extra involvement is just recording when I've had the diaphragm pacing unit on. It is well worth the two-hour drive to Oxford where the set up is perfect for a disease that needs a multidisciplinary approach, such as MND”.

Why is taking part in this trial important to you?

“Anything that can help support your breathing is worth trying.”

What does it feel like to have a diaphragm pacing unit?

“When it's first on it's like having a mildly painful electric shock, but within five minutes you get used to it. I then appreciate the extra suck I get on every breath I take”.

What would you say to anyone thinking about taking part in this trial?

“Go for it, the operation is quick and easy, nothing hurts afterwards, and the chance of a longer life, to me is worth it.”

MND Diaphragm Pacing Clinical Trial