This link supplies the latest information on radiotherapy in the UK. Not sure what it all means but wonder if we should leave comments and answer questionaire.
Comments would be appreciated.

http://www.nice.org.uk/guidance/index.js...yId&o=12353

This is a preliminary document, still open to comments. "The Advisory Committee will meet again to consider the original evidence and its provisional recommendations in the light of the comments received during consultation".

The provisional recommendation is "this procedure should only be used in the context of research" (from the "Interventional Procedures Consultation Document").

The "Interventional Procedures Overview" is not identcal with the consultation document. I am not sure why that is and what their relation is. In any case the advisory committee seems to be reluctant about radiotherapy: "Two Specialist Advisors classified the procedure as novel and of uncertain safety and efficacy (in the UK)". "The perceived benefit of this procedure is to help avoid (or postpone) the need for surgical intervention; however, the underlying disease will usually remain and contracted finger joints will rarely regain their movement. The mechanism of action of radiation therapy is unclear."

See also the thread in this forum about NICE initial consultation http://www.dupuytren-online.info/Forum_E...r-dc-0_746.html.

Comments specifically from UK patients who have experience with RT of Dupuytren's, either in the UK or abroad, might be useful and can be submitted via the page on the the link in the initial post (you need to go the the consultation document for entering comments).

Wolfgang

Edited 03/25/10 16:19

It would be great if we could merge both threads into one but, as usual with software, this will be a feature of the next release ...

To PhilipHa1: Who did you send your question to originally? Ben Doak? Steven Barnes is out of office and responses might take some time.

With regard to Poole I know at least one patient who was treated there and not contacted. Anyway, I am not sure whether more patients would have made a difference because from reading the document I feel that responses from patients were only of interest with regard to side effects. It might sound strange but if a patient reported that RT helped its no proof, just anecdotal evidence. If he/she said it had side effects it's believed and documented.

Wolfgang

Philip,

my comment on anecdotal evidence referred to patients' comments. My feeling is that if a patient reports a good result of RT the committee will not regard this as scientific proof of the effectiveness of RT. They will require statistical relevant data and comparison to a control group (and right so). Interesting enough that's exactly what Seegenschmiedt started about 10 -12 yearss ago. His paper of 2001 was published in a peer reviewed journal and was therefore accepted by the committee. Later reports about the long term outcome of this study from Seegenschmiedt have so far been ignored because they were presented only on a conference. Seegenschmiedt will present a review paper at the Miami conference http://dupuytrensymposium.com/program.html which will go into a peer reviewed book and will then probably be acknowledged by NICE. But it will be another 9 - 12 months before the book is published.

So far I have not seen any report of cancer after RT of Dupuytren's disease. But you woul dprobably need 10 - 100 k patients to find one. Don't know whether so many have been treated and are being tracked. Probably not.

Wolfgang