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Big news! As from 18-12-2017 we are an officially registered charity, with a charity number granted by the Charity Commission. We are number 1176333. A big step forward!
22nd June 2017 After four years of meetings, discussions, appeals, negotiations, and not giving up, we finally have good news.
NICE has published their decision on collagenase use in the NHS, and we are happy with it! No more appeals.
It is allowed with some provisions: only if PNF is not suitable, if it does not interfere with a trial ongoing by Mr J Dias, and if surgeon and patient agree on the use.
Of course where you live can still be a problem, different CCG’s have different rules on how or when to treat Dupuytren’s, but at least it is not a rejection, and surgeons now using it can continue using it.
We owe a great debt to all those who fought for our community, the hand surgeons and therapists involved, everyone at Sobi and the solicitors who helped us (pro bono) with the appeal.
- We are ready to celebrate World Viking Day on 8th May with the start of a Dupuytren’s Awareness Campaign. Check out this new website and the map created to chart patients family origins.
- The Pulvertaft Hand Centre has produced an app to help you schedule your exercises after surgery.
From the International Dupuytren Society about the 2017 Dupuytren Award:
We received many and very good applications making it a difficult decision for our Scientific Advisory Board to select a winner. This is excellent news for Dupuytren’s research and we are looking forward to more papers about this challenging and multifaceted subject!
This year two categories are awarded, “Basic Research” and “Clinical Research”. The winners of the International Dupuytren Award 2017 http://www.dupuytren-online.info/dupuytren_award.html are
· Sabrina Koh et al. “Embryonic Stem Cell–like Population in Dupuytren’s Disease” Plast Reconstr Surg Glob Open 4 (2016): e1064
Clinical Research (two papers received exactly the same number of votes and both receive the award):
· Jeremy Rodrigues et al. “Functional outcome and complications following surgery for Dupuytren’s disease: a multi-centre cross-sectional study” J Hand Surg Eur (2016). pii: 1753193416660045
· Joakim Strömberg et al. “Comparison of Treatment Outcome After Collagenase and Needle Fasciotomy for Dupuytren Contracture: A Randomized, Single-Blinded, Clinical Trial With a 1-Year Follow-Up.” J Hand Surg Am. 2016 Sep;41(9):873-80.
Congratulations to the three winners for their excellent papers! And thank you very much to all of you for your great contributions to researching Dupuytren disease! We are looking forward to new papers and new insights in 2017. There is still a world to explore, in cell research, in pathogenesis, in improving and comparing therapies, and in finding new therapies, and ultimately even a cure for this disease!
The International Dupuytren Society would like to thank all members of its Advisory Board for working through the applications and carefully choosing the winners.
This Award is exclusively funded by donations and not supported by commercial companies.
Wolfgang Wach, International Dupuytren Society
Dr John Glees, who has been our trustee from the moment the charity started, has had an independent audit done of the results of radiotherapy for Dupuytren’s. This is exactly what NICE wanted, in order to be able to give full guidance! We are very happy with the audit and the results.
Dr Glees and his team at Cancer Centre London treated 150 patients over 5 years, using the European Protocol ( 5 days, 3 Gy per day, then 8-12 weeks rest, then repeat).The audit found that 91% of patients had either stabilised or even showed regression of the disease, 4 years after treatment.
This shows that low dose radiotherapy is highly effective provided it is performed in early disease and as it is relatively inexpensive, it offers a good treatment option both private and for use on the NHS. No significant side effects were observed, and patients could continue to use their hands normally during and after treatment.
These are really good results, and offer hope to many people, especially those with a more aggressive form of the disease.
Unfortunately the funding for a secretariat two days per month has stopped per January 2017, so Gemma has withdrawn from the position. That means we are now looking for one or more people to take over looking for grants, organising events and generally assisting the running of the charity. Location is not important, enthusiasm is! Please get in touch if you can help, however many or few hours per month.
While Gary and his wife are running to raise money for the charity, Anna spend two days in February 2017 promoting the charity at a BSSH instructional event, where young aspiring hand surgeons attended lectures by some of the worlds