Hi, I’m Sarah, I’m an MS reporter and I’ve been living with MS for around 12 years. In this final episode of the clinical trials series we’re going to get into what you can do to get involved as well as where and who you can talk to to learn more.
I think some people feel that their doctors or nurses don’t know what’s going on with research, and I know everywhere’s not like Oxford.
So there are specific sites to look about research and see what’s going on. I have to be very honest, there are so many research projects, I like to think I would keep up to date, but there are so many projects going on. Again, to give you some insight, if it’s a commercial study, bizarrely, the sites are often the last people in the chain of where that’s going to be set up. So the sponsoring drug company will have decided they’re going to do a trial, they will then ask various sites whether they’ll take part in the study, and we’re the last people to know. So ClinicalTrials.gov is an amazing website because it will tell you all this…
That’s the American one, isn’t it?
It is American, but if you do any…
It is global.
Yeah. If you do any clinical research you have to register on it. So a handy hint, because when you go- it’s called ClinicalTrials.gov, it has a search engine within it, if you ask it to tell you every trial there is worldwide, there will be many hundreds of thousands. Multiple Sclerosis UK, you’ll find out, and it tells you the trials that are currently recruiting, those that have recruited and those that have closed. So you can see, you can follow them through. It lists- oh sorry, so once you’ve got down to the UK, you may want to know about certain sites. You can put Oxford in specifically or you could put London or you could put England, you can narrow it or widen it as much as you like. Put multiple sclerosis in, often I will recommend that you put in the type of multiple sclerosis, so if you know it’s primary progressive or relapsing remitting, again, because that’ll just narrow the field.
Will that cover all the, say, unit specific trials. So if you’ve got a postgraduate student here doing a small trial on MRI for something…
No, I’m afraid it doesn’t. These tend to be the big commercially supported trials.
Okay, for drugs mostly?
Mostly for drugs. Not all of them, but mostly. And then the information it’ll give you about is the sites that are doing it, it will give you the entry criteria. Now I realise some of that will be medical, but actually most of you, a good example of an entry criteria will be how far you can walk. So people need to be able to walk 20 metres or more with bilateral aid, or perhaps some of them will want people who can walk further than that. But you can assess for yourself from that quite often whether you fit the entry criteria or not. And that’s helpful.
And if I want to read the trial’s success rate and kind of read the findings, is there someone I should talk to to kind of explain what it shows, is it all quite technically or medically jargoned?
Yeah, so let’s say a trial that’s reported its primary results on ClinicalTrials.gov, it will be quite technical, not impossible but quite technical, then I think you should download that and take that to your consultant or specialist to talk about what it means. Because there can be a lot of detail in that report which can be quite difficult to, sometimes, to push through. But I think most consultants would be very happy to talk through the results of a trial.
And what should I do before I go on a trial?
Yeah, so I think – it depends what the trial is – but let’s say a trial on progressive MS, where as we know, the options are limited, have a look at the summary of the trial, have a look at the length of the trial. So, for example, the MS STAT-2 [?] trial’s a three-year trial with visits every six months. That’s a commitment and if that person’s about to move to Spain in a year’s time then it won’t work out for either party. But have a look, have a think about it, think about the travel. There’s normally a modest travel budget, but will you be able to come in to the trial. And some trials have MRI, for example, do you want to have an MRI. So I think just look carefully and think about the commitment, because the commitment’s on both sides. But hopefully, everything looks fine and then I’d say go for it, go for it.
And if you’re to move during a trial just across the country, could you still take part in the trial?
Yes, so of course all of us move at different times, so that’s absolutely fine if we’re moving from, say, London to Liverpool, we’d make contact with the Liverpool investigators and they’d carry on your care there. So those arrangements are fairly straightforward to carry out.
If I find a trial that I’m interested in, what are the next steps?
Yeah, so you’ll see the basic information and there will be a click box for an expression of interest to the trial site and then they will make contact with you and send you more information. They will ask for your permission to be in contact with your care team, and that’s important so that everything is joined up and so that your care team and the investigator for the trial know that everyone can see everything that’s happening to you, really for safety and good medical practice. But then, from there on, the investigator for the trial would be looking after you in the trial, but also you’ll carry on with your standard NHS care through your care team. So I think it’s just important to join up all the dots, but I’m really keen that people with MS take the initiative, look around for trials of interest, make that contact, and then everyone’s on the same page moving forward.
So how would I find out about clinical trials? Is there somewhere I can go online or someone I need to speak to about…
Yeah, so a number of different places. So the charities, for example, the MS Society will have a page on clinical trials. The government sponsoring department, the NIHR, has a place. Also the MS Register is increasingly having clinical trials postings. So a number of different ways and then that will drop down into the basic description of the trial, and then will drop down as to how to apply into a trial.
So there you have it. That’s the final episode in this clinical trials series. We always love hearing from you, so let us know your thoughts in the comments. Have you ever been involved in a trial? What have we missed? We know this is largely UK focussed, what are the trials like where you’re from? If you found this series useful, why not subscribe for lots more MSer driven expert questioning. And from me, the experts and from all of the MS reporters in this series, thanks for watching and catch you next time.