Medical Trials

Primary progressive MS
1

As general questions for the PPMS & SPMS members:

  1. Who is taking part in formal medical trials to support finding a cure or a medication specific for our types of MS

  2. If you’re taking part in trials, where is it being held

  3. What is the trial trying to achieve

2

Hiya, I’m PPMS and no trials have been mentioned to me.

3

I’ve taken part in two. If you google on NHS and trials, you should be able to find some info.

The first one was the STREAMS trial at Imperial College - they approached me due to lesion activity on MRI, I’d had that MRI after seeing a consultant my neuro rehab doctor referred me to when I said was interested in trials. My stemcells didn’t grow in the lab so that ended pretty quickly. As it was an NHS trial, they did reimburse mileage and fed me and hubby when we had to go in for the day to have stemcells harvested. They also had a special lounge for participants/family etc.

The second was for a spasticity drug. It was an online thingy I saw on facebook and I was rejected immediately after completing the online form… then a nurse called me. It was a drug company phase two trial, so the company paid for taxi journeys to/from the hospital and was happy to pay for lunch/coffee.

Good luck, they are doing HSCT trials for PPMS patients but there’s quite specific criteria to meet - I didn’t

Sonia x

4

Oh, and NICE have now approved Ocrevus

5

Isn’t that just for RRMS, though?

6

I’ve taken part in the Microbiome study in Edinburgh. It’s part of an international study looking to see if the content of our gut is a factor in ms. I’m also taking part in the Tonic study which is looking at quality of life for ms sufferers.

1 Like
7
8

That’s not NICE approval, that’s EMA approval - so don’t hold your breath for this on the NHS - and it’s also only effective for pwPPMS - see Prof G’s comment from 5/3:

http://multiple-sclerosis-research.blogspot.com/2018/03/ask-barts-ms.html?showComment=1520239094545

And let’s keep our expectations managed for now anyway:

http://multiple-sclerosis-research.blogspot.com/2018/01/newsflash-wait-is-over-ocrelizumab.html

9

Good and reliable source of info:

10

Basically I’m one of those people that will join any trial (if I’m considered suitable!) - and having SPMS I feel as if we’re at the back of the queue for up and coming remedies.

With this in mind my Neuro fortunately put me in for a meeting with the Cambridge Progressive MS Clinic (and Dr Stefano Pluchino) near Addenbrooke’s hospital who’s group is looking into using each individuals skin cells to make personalised stem cells to combat their variant of progressive MS.

More info below for any body interested in trying to contact:

11

Wow, looks very interesting. Are they using just SPMS ‘clients’ in the trial or all MSers?

12

Hi Tippy, They’re using both PPMS and SPMS ‘clients’ - at the moment they’re collecting names of those that wish to be involved and are prepared to give “bio-fluids” (ie. blood, etc.) each year. There’s also a Facebook page set-up to explain the clinic’s ongoing work further (check out Cambridge Progressive MS Clinic on Facebook)