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NICE Initial Consultation Response on approval for RT for DC
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11/01/10 13:20
philwaite 
11/01/10 13:20
philwaite 
Re: NICE Initial Consultation Response on approval for RT for DC

In mid-October, NICE circulated their final interventional procedures document on ‘Radiation therapy for early Dupuytren's disease’ as well as the consultation comment tables with details of the Committee’s responses.

Participants in the review now have until 3rd November to examine the Institute’s ‘Interventional Procedure Advisory Committee’ documents & submit any requests for final review.

Having thoroughly read the papers, it looks to have been a very open & fair review (for example, I can find a record of my inputs & alongside, the committee responses/comments)

The Institute’s Interventional Procedure Advisory Committee may therefore authorise the publication of guidance on ‘Radiation therapy for early Dupuytren's disease’ fairly soon.

This would be very good news for UK patients hoping to pursue this option.

11/01/10 19:40
spanishbuddha 

Administrator

11/01/10 19:40
spanishbuddha 

Administrator

Re: NICE Initial Consultation Response on approval for RT for DC

philwaite:
In mid-October, NICE circulated their final interventional procedures document on ‘Radiation therapy for early Dupuytren's disease’ as well as the consultation comment tables with details of the Committee’s responses.

Participants in the review now have until 3rd November to examine the Institute’s ‘Interventional Procedure Advisory Committee’ documents & submit any requests for final review.

Having thoroughly read the papers, it looks to have been a very open & fair review (for example, I can find a record of my inputs & alongside, the committee responses/comments)

The Institute’s Interventional Procedure Advisory Committee may therefore authorise the publication of guidance on ‘Radiation therapy for early Dupuytren's disease’ fairly soon.

This would be very good news for UK patients hoping to pursue this option.

Thanks for this update. Please can you post a link, as I can only find the July consultation document as the latest?

11/02/10 10:45
philwaite 
11/02/10 10:45
philwaite 
Re: NICE Initial Consultation Response on approval for RT for DC

At this stage, the 'work-in-progress' documents have been circulated to the registered participants in the review. I assume that we will have to wait for the official release of the publication guidance before any link will be available.

11/05/10 16:08
phil 
11/05/10 16:08
phil 
Re: NICE Initial Consultation Response on approval for RT for DC

Good to see Radiotherapy might soon be available on the NHS in the UK.I`ve just returned from Hamburg from my annual check up with Prof Seegenschmiedt.His clinic in Hamburg is first class and I was pleased to have followed the Prof from Essen to his new Hamburg Clinic.It is now 4 years since my treatment-left hand only and the disease has remained stable allowing me to continue my profession as a musician.Prof Seegenscmiedt`s consultation was deeply informative and thorough-both hands and feet.Despite disease progression in both feet and the right hand no treatment was recommended as yet.The Prof believes in a a conservative use of Radiotherapy-only use it when necessary!If the disease is not presenting functional deficit in hands or feet,then treatment can wait.I will return in 12 months time for my next annual check up.It is of great reassurance to have treatment and follow up with a thoroughly competent and informed Physician.His experience of Dups goes back a long way and he is still innovative in his treatment of the disease showing me new ways he has developed for technicians to make the leaded shields for hands and feet via photocopies with acetates serving as visual moulds!!It would be great if Professor Seegenschiedt could hold a seminar for Radiologists and allied Practioners in the UK!That would speed things up ffor us and help establish standards of diagnosis and treatment here.

Phil Oxford UK

11/05/10 19:19
Larry 
11/05/10 19:19
Larry 
Update on Prof. Seegenschmiedt / Hamburg Clinic

Thanks Phil, for your detailed report from your visit in Hamburg, where you met the Prof ...
You mentioned that he is still inventive with regard to examination ... could you give more
details on this aspect ? Can he back up his clinical work with magnetic resonance imaging ?
The Hamburg Clinic states that they have a 3 Tesla MRT unit available .... Is it worthwile to
use this imaging technique fo,r early diagnosis and follow-up evaluation ? Would like to get
more information, THX , Larry

11/05/10 22:44
spanishbuddha 

Administrator

11/05/10 22:44
spanishbuddha 

Administrator

Re: NICE Initial Consultation Response on approval for RT for DC

phil:
Good to see Radiotherapy might soon be available on the NHS in the UK.I`ve just returned from Hamburg from my annual check up with Prof Seegenschmiedt.His clinic in Hamburg is first class and I was pleased to have followed the Prof from Essen to his new Hamburg Clinic.It is now 4 years since my treatment-left hand only and the disease has remained stable allowing me to continue my profession as a musician.Prof Seegenscmiedt`s consultation was deeply informative and thorough-both hands and feet.Despite disease progression in both feet and the right hand no treatment was recommended as yet.The Prof believes in a a conservative use of Radiotherapy-only use it when necessary!If the disease is not presenting functional deficit in hands or feet,then treatment can wait.I will return in 12 months time for my next annual check up.It is of great reassurance to have treatment and follow up with a thoroughly competent and informed Physician.His experience of Dups goes back a long way and he is still innovative in his treatment of the disease showing me new ways he has developed for technicians to make the leaded shields for hands and feet via photocopies with acetates serving as visual moulds!!It would be great if Professor Seegenschiedt could hold a seminar for Radiologists and allied Practioners in the UK!That would speed things up ffor us and help establish standards of diagnosis and treatment here.

Phil Oxford UK
Phil. Thanks from another for this update. I see you're a musician. I'm a budding pianist and wonder if you would mind clarifying why you have not had treatment: you see I have early stage DC, no functional impairment yet, but it's active in the sense that the mass has grown over the last few months, so I would have expected that RT would be ideal to be performed now; but perhaps at this stage the risk outweighs the benefits. Thanks for any insight.

What instrument do you play?

11/06/10 17:28
Larry 
11/06/10 17:28
Larry 
Re: NICE Initial Consultation Response on approval for RT for DC

spanishbuddha:
phil:

.... Phil Oxford UK


Phil. Thanks from another for this update. I see you're a musician. I'm a budding pianist and wonder if you would mind clarifying why you have not had treatment: you see I have early stage DC, no functional impairment yet, but it's active in the sense that the mass has grown over the last few months, so I would have expected that RT would be ideal to be performed now; but perhaps at this stage the risk outweighs the benefits .... Thanks for any insight.

What instrument do you play?

I am playing PIANO and I have asked the "Prof" exactly about this aspect and to my knowledge he
explained to me the following aspects :

(1) current status of disease ... is it already necessary to treat (e.g. starting angulation / functional deficit) ?

(2) speed of the current disease ... speed of disease development over the last 12 months (no / slow / rapid change) ?

(3) actual proof of changes ... developments of new nodules / new cords / angulation starting (e.g. from 0° to 5° ) ?

(4) impeding functional changes ... spread of fingers in the nodular stage (e.g. grip of an octave for pianists) ?

I am carefully looking wether I can play CHOPIN with its octave (between finger 1 and 4 or 1 and 5)
but also with sext accords (between finger 1 and 4 or 2 and 5) and - according to Prof. Seegenschmiedt -
make a "spreading test" of my hand and sketch the outline of my fingers on a piece of paper for comparison ...

This helps me to get a good feeling of how my DD develops .... Best regards, Larry

Post scriptum - A matter of fact: Prof. Seegenschmiedt would be also an ideal candidate to teach patients ... !

11/26/10 12:38
handhurt1 
11/26/10 12:38
handhurt1 
Re: NICE latest info for UK

Go to following link for the latest information on radiation treatment in the UK:-

http://guidance.nice.org.uk/IPG368

Things are looking better

11/26/10 22:29
spanishbuddha 

Administrator

11/26/10 22:29
spanishbuddha 

Administrator

Re: NICE Initial Consultation Response on approval for RT for DC

handhurt1:
Go to following link for the latest information on radiation treatment in the UK:-

http://guidance.nice.org.uk/IPG368

Things are looking better

Yes that's a result, or at least a beginning. Thanks for posting this.

My GP is/was very much against proceeding with an experimental (his words) procedure, so this report and guidance with the history will help.

But, how to get some NHS trusts to step up and start offering this, or is it now the GP's as fund holders?

I am going to write to my local hand clinics, but they have surgeons as their lead consultants, so I don't think that approach will succeed. Any other ideas how to tackle it? (question aimed at fellow UK patients, and doctors).

11/29/10 18:28
PhilipHa1 
11/29/10 18:28
PhilipHa1 
Re: Daily Mail (UK national newspaper) article on treating Dupuytrens Disease with Radiotherapy

http://www.dailymail.co.uk/health/articl...awed-hands.html

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