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Could we develop some form of ‘Best Practice’ guide?
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03/16/2010 13:55
philwaite 
03/16/2010 13:55
philwaite 
Could we develop some form of ‘Best Practice’ guide?

Could the society consider developing a section of the site dedicated to giving members quick access to ‘best practice’ guidance on important & recurrent issues?

For sure, this disease is somewhat unpredictable in its development and, to add to the complexity, we as patients bring our own unique, individual, biology into the mix. I therefore totally accept that we cannot hope to create one faultless ‘best practice’ catalogue that would become the perfect solution for all issues for all sufferers. However there must surely be sufficient sound experience and consensus available for publication on our site (in a quick access format).

To ‘qualify’ for inclusion, the potential entries would ideally be vetted by an expert panel before publication.

Some examples of the many recurrent themes on the forum:
- Finger stretching/bending in the early stages (before formal treatment) – helpful or damaging?
- Diet and disease progression – vegetarian advantage?
- Alcohol consumption and disease progression – zero intake, moderate only, no significant effect?
- Physical stress to the hands at work or play – stop the activity, moderate or no significant effect?

Might this be a useful refinement to an already excellent site?

03/16/2010 14:57
callie 
03/16/2010 14:57
callie 
Re: Could we develop some form of ‘Best Practice’ guide?

I don't think it would be possible.

You asked, "Might this be a useful refinement to an already excellent site?" The conclusions would be very far from scientific validity that they would be useless. Some of your questions have been answered in studies.

I do agree that a summarization of studies would be helpful. A good start would be "Dupuytren's Contracture, Features and Consequences" by Stephan Wilbrand, ACTA Universitatis Upsaliensis, Uppsala 2002.

And, "Dupuytren's Disease" by Raoul Tubiana.

Edited 03/16/10 17:05

04/26/2010 14:46
philwaite 
04/26/2010 14:46
philwaite 
Re: Could we develop some form of ‘Best Practice’ guide?

The new forum 'search' facility - launched today - is excellent & goes a long way to address my concern that many valuable inputs were getting ‘buried’ and were difficult to track & bundle together with similar ideas & experiences.

Great job - thanks !!!

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stretching   Universitatis   Consequences   unpredictable   ‘qualify’   development   excellent   refinement   significant   conclusions   progression   experiences   ‘buried’   summarization   Practice’   publication   consumption   ‘Best   Upsaliensis   Contracture