Claire asks <strongAnna what trials are currently taking place at the Anne Rowling Clinic.
Can you tell us what trials are currently taking place at the Clinic and how can MSers get involved?
Yeah. So I think if we can expand that to trials and studies.
Oh, absolutely, yeah.
Because for me, trials are drug trials and there are some of those going on, but there’s also some interesting studies going on where we’re not giving people drugs, but we are studying MS. So, where shall we start? So there’s one trial which is a drug trial for patients with secondary progressive MS, called the SMART Trial. And this is an interesting trial because it’s using three drugs that we already know about. So one is a blood pressure lowering pill and one is a pill that was more used in motor neurone disease, and the other one’s an antidepressant. And there are four arms to this, so people get allocated to one of those arms, so one of those drugs or a placebo. And then the idea is that these are supposed to try and reduce the rate of progression, so reduce the rate of accumulation of disability. Now, that one has just finished recruiting and this is a trial between Edinburgh and London and it’s a two-year trial. So it will be interesting, new people can’t be recruited into it now because it’s recruited all the people it needs, but it will be interesting in two years to find out if there is a difference between the groups, because if that’s the case then these are drugs that we already know, that we know their safety, they are off-patent, so they’ll be very cheap. And so, you know, if something works that will be readily available to MS patients quickly, so that’s good. Then there’s another one called FutureMS which is just setting up, and this is trying to get the other end of MS where you get diagnosed with MS and then you would really quite like to know how you’re going to do, so over the next 40 years. And of course we can’t tell you that at the moment, so the idea of FutureMS is to take people within six months of their diagnosis of MS and get lots of information from them – age, sex, what they eat and what they do, etc.
Lifestyle stuff, exactly. And then to see how they then do over the next year, two years, etc. So to see whether you can use any of these markers to predict how people do. And I think that will be quite interesting, and that’s a Scotland-wide study to try and work out whether we can predict how people do.
So how would people get on that if they were interested in taking part?
So you have to be within six months of your diagnosis, so anybody who is, all of the MS teams in Scotland are signed up to this and the MS nurses are as well.
Right. So it’s something that when you were discussing with your consultant or your nurse they would advise you about it.
They should know, they will know, and they should remember to remind you about that. But if people are very keen to be involved then they should raise it as well with their nurses or their consultants to make sure that they don’t miss out on that.
And is that something just confined to Scotland or is it open widely?
It’s just confined to Scotland at the moment, so FutureMS is Scotland specific at the moment. So that’s quite interesting, and there are two research nurses who are involved in that and they go round and help people in the rest of Scotland to gather the detail. So there are two more actually. So there’s one which is commonly known as the ‘poo trial’. Have you heard of this one?
Alright, I’ve heard about that one, yes, I have.
Yes, absolutely. So this one is interesting, so we’re not running it but we’re part of it – it’s run from San Francisco. And there’s an idea that what people eat changes what bugs they have in their gut and what bugs they have in their gut is quite important to their immune system. And so what we’re trying to do is take people who have MS, and people living in the same household sharing their food who don’t, and then take samples of poo, twice, send them to San Francisco…
They’ve got to go to San Francisco?
Yeah. I always find that quite a sort of interesting imagination, you see poo flying to San Francisco. And there they will look at what bugs are in the poo and see if there’s differences between people who have MS and people who don’t. And actually, it sounds completely wacky and mad, but actually there’s quite a lot of scientific evidence to say that that might be quite important, so I think that’s quite a good study. AAnd the last one that I was going to talk about was actually the brain, the tissue, a brain bank study. So what we’re also trying to do is expand the amount of tissue we have available to do research with from human people, rather than from rats and mice who don’t get MS. And so what we’re trying to do now is really advertise so that when people do die, to ask them whether they’d be prepared to donate their brains to our brain bank. Now, we’ve always been able to do that in the UK because the MS brain bank runs through London, but what we’re trying to do is set up a sort of an offshoot of that in Edinburgh, because there’s so many people in Scotland with MS, it would make much more sense to collect them in Scotland rather than have to send them all the way down to London. And so what we’re trying to do is to say well, are people prepared after their death to donate their brain, though it’s parts of brain rather than the whole brain, so that we can actually say, okay, we’ve found these interesting things in mice and rats but is it relevant to people, and there’s nothing like looking at real brain. We can do scans, but scans just show pictures. You can do mice and rats, but then mice and rats, but actually looking at brain from MS patients is a very precious gift, if we can get it. And so we’re also trying to advertise that a bit, say is this something that people would like to do. We’ve actually had quite a lot of enthusiasm for it. It’s a bit like holding a donor card.
I was going to say, is that what you do?
Yes, so exactly, this is currently not quite through the ethics committee yet, but we’ve actually designed cards that say ‘MS Donor Cards’, and so the idea is that if somebody does die, either of MS or, you know, road traffic accident or whatever, absolutely, then people can ring the number on it and then all of the problems get taken away. So that then is all organised by us, because we don’t want families having trouble trying to contact us. And then the idea is then the brain will be kept here, but then sent out to any research groups sort of doing bona fide research on MS. So this will be internationally available and an offshoot of the London bank. And the idea here is that if you want to do really good research, then the quicker you get the brain into the freezer, or whatever. I’m sorry, but being practical about it, the quicker you get it somewhere safe, the better quality research you can do from it. Which is why I think going to Edinburgh is much better than going to London, because then we can get better quality brains and get lots of fresh tissue and do really cutting edge research on it. So that’s the other study that we’re going to be pushing relatively soon. There was an article in MS Matters magazine about it fairly recently, but we can’t completely advertise it until we get it through ethics.
So people need to wait and then…
Yeah, it shouldn’t be too long now. But once it’s up we’ll advertise it and then hopefully people will say well, I’m happy to donate my heart or my lungs, maybe I’d be happy to donate my brain as well, some people, it would be great.
And are there any clinical trials that people can get involved in at the moment?
At the moment there aren’t any drug trials that are actively recruiting but there should be some coming up soon. There’s a difference in the clinic about the ones that we’re involved in where we might get five patients in an international trial, and the ones that we’re running ourselves where you might get 300 patients. So the SMART Trial was one where we had a lot, you know, hundreds of patients, but FutureMS, hopefully we’ll get as many people as we can. In terms of the international trials they’re five, because you want five from different centres to sort of get a large number internationally from lots of centres. So those ones come up all the time, it’s just a matter of sort of signing up, if you like, within your clinic to say I’m interested in research. Because there is, the other thing that we have is we’re not allowed to ring you up on the off chance that you might be interested in a research study, because that’s cold calling. But if you say, I’m interested in a research study and we’ve noted that somewhere, then we can. And so, you know, I have people in my mind or even on a list that I know would be interested if a trial came up. But I think that’s an important point for people wherever they are, is that if they are interested in research is to make sure that their MS teams know, because then if something comes up, then they can call you. If you’re going fairly frequently anyway for blood tests then you’ll get to know they’re happening, but if you’re only going once a year then you might miss out if you’re not sort of signed up and proactive about it. So that’s where we are at the moment.
Very good. Very good, thank you.
MS Reporter: Claire
MS Expert: Dr Anna Williams works in research and is an Honorary Consultant Neurologist, at the Centre for Regenerative Medicine at Edinburgh University, she researches why remyelination fails in MS and what can be done to improve its efficiency.