New CRPS drug – participants sought for UK trial

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If you’re a regular reader of this site, you’ll probably have seen several articles about the new CRPS treatment being touted as a cure, currently available only in Italy:

The Italian treatment comprises infusions of Neridronate, a bisphosphonate drug, previously used to treat bone diseases.

Unfortunately this Italian treatment is not guaranteed to help everyone, with its efficacy inversely correlated to the duration of the disease; basically, the longer you’ve had CRPS, the less help this is likely to be. As Richard Lowes explained in a previous article  it’s also very pricey, with the clinical costs alone at around £14,000 and that’s before you even start to factor in travel and accommodation costs.

A new opportunity

Well, there’s now a clinical trial recruiting in the UK that offers sufferers treatment with another bisphosphonate: zoledronate. As Richard Lowes stated previously, just like Neridronate, this drug binds to bone and stops its breakdown, commonly being used for treatment of osteoporosis and cancer. And importantly, participating in a clinical trial doesn’t cost you a penny. In fact, they’ll even pay you to cover your travel costs.

What’s the trial?

The Create-1 Clinical Study is a large-scale clinical trial, involving participants in the USA, Canada, Australia and the UK. It’s being run by the drug’s manufacturer, Axsome Therapeutics, and involves patients either being given a placebo or an oral preparation of Zoledronate over about a six week period.

What are they studying?

The doctors running the trial will be looking at the difference in patients’ pain levels over a period of time, both before and after the treatment. They’ll also be looking at the wider impact of pain, assessing things like mobility, self care and anxiety levels.

Where’s it being conducted?

In the UK, centres include Warrington Hospital, St Thomas’ Hospital in London, Norfolk and Norwich University Hospital in Norwich and Darlington Memorial Hospital.

Who can take part?

The trial’s website, www.crpstrial.com, asks visitors to undertake a simple questionnaire to see if they’re eligible. Unfortunately, there’s a big catch here: you can only participate if you’ve developed CRPS in the last twelve months. I’ll be honest, having had CRPS for nearly six years myself, I was fairly crushed by that one as I’d give pretty much anything for a chance of this treatment.

Interestingly, the questionnaire doesn’t ask if you have an established diagnosis of CRPS, instead asking you to select the symptoms you’ve experienced from a list, with all of the options available matching elements of the Budapest criteria. There’s an unspoken acknowledgement here that it’s quite possible a new CRPS sufferer may not get a diagnosis within the first twelve months of their pain.

Where can I find out more?

If you think you could be eligible, start off by visiting www.crpstrial.com and filling in their eligibility questionnaire. Your details will then be passed to your preferred study site.

What does this mean for CRPS patients?

I firmly believe that ANY new treatment or clinical trial for CRPS can only be a good thing. The more research we do, the better a picture is built up of what causes and perpetuates this devastating illness. Bisphosphonate treatment is the most exciting new option to come along for CRPS patients in a while so this trial can do nothing but benefit us in the long term.

It’s also a step forward that this trial is looking at an oral preparation of the drug rather than the much more invasive infusions that have previously been necessary. If there’s a choice between taking a tablet and having a drip placed in your arm, there’s no question which is the better option; especially so in CRPS sufferers, where even sticking a needle in your arm carries the risk of a CRPS spread to that area.

Having said that, I’m disappointed that they’re restricting participation to only the recently diagnosed. It chimes with the claims of the Italian team; they restrict their use of the word “cure” to those who’ve only had the disease for a few months, but do claim that it can still be helpful to those with longer-term CRPS. Again, though, that just sits in line with what we do know about CRPS; namely, that the quicker it’s diagnosed, the more treatable it is.

I’m not surprised that Axsome Therapeutics is restricting its participation to those with statistically the highest possibility of complete reversal of their symptoms. As a drug company, it’s far more compelling to be able to talk about curing an incurable disease as opposed to merely slightly reducing someone’s long-term intractable pain. I just really hope that, if and when this treatment is proven effective in those with recent onset of CRPS, the rest of us get a chance to have a go at it too.

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