Trials happening

Exciting times!

The new bank account has been approved, so that is a step forward. Now We just have to get it up and running, and change bank details with all the giving sites and donors. I feel a coffee-binge coming on!

 The Dutch radiotherapy trial for Ledderhose is well under way, there are plans for a Dupuytren's radiotherapy trial in Australia, in Finland is a trial comparing PNF, Xiapex and LF surgery, and the two trials running in our country, RIDD and DISC are recruiting patients all the time. So doctors out there are trying to get more understanding of what treatment to recommend at what stage!

 The official announcement for the Dupuytren Award is expected soon, this year funded by patients and doctors!

Meanwhile if you are going to try any Over The Counter products for you health problems, think of this picture before you spend your money!

 

Have a good Easter or Passover this weekend, or just have a good weekend!

 



NICE radiotherapy guidance

NICE has put the latest Radiotherapy guidelines on their website. It will remain available on the NHS for Dupuytren's but limited to clinics that can and will perform audits of the results. There are no safety concerns for the treatment, and repeat treatment is a possibility. So for now not much changes, and clinics that perform RT on the NHS should be able to continue doing so as long as the patient's CCG pays. We are happy with this decision!

Radiotherapy for Dupuytren's experience wanted, and video interviews for general awareness

Even though NICE has not decided on Xiapex use yet, they have now decided to review the guidance for radiotherapy in early Dupuytren's. So far it was limited guidance with any NHS treatment needing to be done in a centre where the results were special arrangements for clinical government, consent, and audit or research are in place. This has limited the number of centra willing to perform the treatment.

NICE now decided on a consultation where they want patient to fill in a questionaire, to help them decide if the procedure is safe and effective enough and if special consent is needed.

So we are looking for any patients who have had radiotherapy treatment and are willing to help, to start by filling in a questionaire, maybe at some stage one or two will be asked to come to London or Manchester for the appraisal if NICE wants to ask more questions (that is what happened with the Xiapex appraisal, but you can just say no if you can't come).

So please, anyone who had radiotherapy and wants to help try and make it available for more patients, contact me on anna@dupuytrens-society.org.uk , or via our Facebook page or group.

We are also still looking for people to do a video interview with SayCommunications on how Dupuytren's has affected their life, everyday tasks, work and / or hobbies, for an awareness campaign.

This will be to explain to doctors and the rest of the community that even if Dupuytren's is not dangerous it does need  treatment before a patients hands get really bad.

And of course we are still working on a campaign for Peyronie's, Dupuytren's little brother disease that nobody likes to talk about. But we will change that!

So if you want to help us with any of these causes, use my email, go via the website on the contact us page, go to our Facebook page.. get in touch!!

April 2015

So much is happening, yet so little is achieved- or so it seems sometimes.

 

NICE has decided not to make a decision but to ask for more research, specifically in recurrence times. We have decided that is good, it means Xiapex can still be used on the NHS by PCT's that have decided to allow it and meanwhile data are being gathered about it's longterm effect.

 

There is a new Facebook group, DART- Dupuytren's Advocates for Radiation Therapy, set up specifically to help patients understand the use and timing of radiotherapy, find centres where it can be done and generally discuss if it would be a good option for the disease in the stage they are in and the speed of progression they show. It aims to be a worldwide group, the language is English.

 

There is some need for a spanish Facebook group for Dupuytren's, as so far the 3 active groups are all in English. Anyone who can help?

 

Preparations for the Dupuytren's conference are continuing, Gary and I have booked our tickets and are looking forward to learning a lot about the latest research and thoughts on how to fight this disease.

 

I have been looking into the Icelandic miracles, where Dupuytren's is mentioned in some way. Found one book that should have a mention of it, but it is in old-Norse. If anyone can translate that I would be grateful (and surprised).

 

I am postponing the AGM we should have had in march ( did not manage to arrange it then for family reasons) and will discuss with Gary when we are in Groningen what we can do about it.

 

Next post might be after the conference! I hope the weather gets warmer soon and eases everyones hands and feet a bit.