Dupuytren's and equality

[watervole]

 I'm a trustee of the British Dupuytren's Society, and we're being asked to provide input towards an evaluation by NICE of collagenase.

NICE are incredibly careful to ensure equality and avoid discrimination and have invited patient groups for Africans and South Asians and the like. 6 out of the 8 patient groups invited are for ethnic/religious minorities.

Ironically, this actually stacks the deck rather badly as Dupuytren's is almost unknown among black and Asian people.  It's a disease of northern European white men (and Japanese) and is heavily skewed towards whites, men and the elderly...  (Not a disease of the rich, all sorts of people get it)

There's a strong genetic component - we have no idea why.  (One presumes that some factor relating to the disease may be of advantage to Northerners, or it would not be so widespead)  The odds are very high indeed that you will personally know at least one person with Dupuytren's - but you probably won't know they have it unless their fingers are really badly bent.  (I can spot it very early on, but I've developed an eye for it over time)  If you live in Scotland, the odds are even higher.

We've suggested that NICE add Age UK and a men's health group to their list of groups being consulted.  (I'm not sure that there are any advocacy groups for Northern Europeans)

Comments

[vjezkova.livejournal.com]

This is very interesting and new for me. My mum suffers from aftereffects of two unsuccessful operations on her palms. She is almost 91 now and her fingers are disfigured, But even that doesn´t prevent herfor playing the keyboard!

[watervole.livejournal.com]

If your mum has Dupuytren's, then keep an eye on your palms. If you develop small lumps that start painful and then stop hurting after a couple of months, then you may have Dupuytren's.

Some forms of treatment are best in the very early stages (radiotherapy) and some are better later on.

Surgery is the most commonly offered option (certainly in England) and may be the best option in badly advanced cases, but is (in my opinion) not the best option in less advanced cases. Dupuytren's cannot be cured (though radiotherapy early on will stop/slow many cases), but treatments like PNF and collagenase can be repeated over time.

See our web site if you haven't been there already.

alltrials.net

[dumain.com (from livejournal.com)]

I suspect you read his blog but I thought I'd point out that nice Dr Goldacre is trying to recruit patients' groups.

Re: alltrials.net

[watervole.livejournal.com]

We're in the process of doing that right now. (it's not actually that clear how you sign up as a patient group)