Since coming across this page http://dupuytrens.org/DupPDFs/dirlist.htm of the Dupuytren's Foundation I have spend a lot of time updating my Dupuytren's library. I now have over 1,400 articles and my personal Mendeley account is full. Fortunately they gave us a year free group account for the charity, and that contains 2 GB so far, and can go up to 100 GB so I can continue collecting for a while!
On a sad note: our chairperson Judith has decided to step down for personal reasons, so now we are down to 2 trustees. We have put feelers out to see if some of the people who helped us when we started the charity would be willing to step in, if not there will be a public appeal. For now we will wait a few weeks for any replies, but any volunteers who would like to be involved please contact us through the website or facebook.
NICE have to decided to go ahead with the appraisal of Xiapex, which means they are going to decide if it should be available on the NHS or not. So far they have not taken any of our comments or suggestions on board, but we'll keep trying. They don't expect to decide anything before 2015, so don't get excited folks! lol.
We have a beautiful picture on our website, courtesy of Megan Lindquist. Lovely cheerful waving hands. Dupuytren's patients are a good bunch.
That's it in a nutshell for our news, I will keep you all informed if anything else happens.
Oh and Wigan won the Challenge Cup! YEAH!!!
Keep up to date with all the news from the British Dupuytren's Society.
Showing posts with label Mendeley; library; articles; publications; dupuytren's. Show all posts
Showing posts with label Mendeley; library; articles; publications; dupuytren's. Show all posts
Sunday, 25 August 2013
Sunday, 9 June 2013
June already, another month gone
Well I am still ironing out little crinkles in the new website, but so far have had a lot of positive responses. It does look good, there is a search function now, it's easy to navigate.. Definitely worth all the work and the hassle.
I have put together a reply to the BSSH, British hand surgeons are very much against radiotherapy and it would be great if we could change their minds only slightly. Most GP's look on the BSSH guidelines for what to do if a patient presents with Dupuytren's, and if that states to wait till it's bad enough for surgery, can you blame the GP? Well yes, maybe, as they should be aware of the NICE guidelines for radiotherapy of course, but GP's have a busy life and can't know or remember everything about every disease and it's treatment options. So we aim to give a bit of a helping hand, even if the hand may be a bit knobbly!
Gary is busy settling into his new role as father, he seems to be enjoying it and doing a good job.
Meanwhile I keep collecting interesting articles I find online about Dupuytren's, it's genetics, related conditions, anything I can find that doesnot just give an overview of what we already know really. I have over 300 articles now, all neatly organised in Mendeley. That is a very useful program.
So I keep doing little bits, and it seems like not a lot, then suddenly we make a jump forwards, like getting the website ready.
Time for some sunshine now, after working all week I am still white and everyone else is tanned!
Anna
I have put together a reply to the BSSH, British hand surgeons are very much against radiotherapy and it would be great if we could change their minds only slightly. Most GP's look on the BSSH guidelines for what to do if a patient presents with Dupuytren's, and if that states to wait till it's bad enough for surgery, can you blame the GP? Well yes, maybe, as they should be aware of the NICE guidelines for radiotherapy of course, but GP's have a busy life and can't know or remember everything about every disease and it's treatment options. So we aim to give a bit of a helping hand, even if the hand may be a bit knobbly!
Gary is busy settling into his new role as father, he seems to be enjoying it and doing a good job.
Meanwhile I keep collecting interesting articles I find online about Dupuytren's, it's genetics, related conditions, anything I can find that doesnot just give an overview of what we already know really. I have over 300 articles now, all neatly organised in Mendeley. That is a very useful program.
So I keep doing little bits, and it seems like not a lot, then suddenly we make a jump forwards, like getting the website ready.
Time for some sunshine now, after working all week I am still white and everyone else is tanned!
Anna
Saturday, 6 April 2013
Dupuytren's publications
Gary mentioned a nice little program (free) that can sort out PDF files on your computer. So I gave it a try. Love it, it can import files, finds author name date etc by itself in many cases, you can make annotations in thetext, add tags or keywords for easy finding.. And you can for a group to share some of the files with 2 other people ( Gary and Judith, my fellow trustees)
Problem: in the group you can only share up to 100MB of data. And over the last 18 months I have collected a lot more! Maybe I have been going over the top a bit, anything that was a free download and looked interesting landed on my computer, so I have over 220 publications on my computer, and
I am never going to find the time to read them all!
Still Mendeley allows sorting them into folders, so I have made a radiotherapy folder for when we have time to formulate a response to the BSSH ( we need 2 or 3 of us on the computer at the same time for that), and a folder for articles on prevalence and statistics, historical papers, ectopic disease.. and a general file.
So if anyone is looking for an article, I can't promise I have it but you can always ask!
Anna
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