December 2013 We moved back to the old website address of dupuytrens-society.org.uk, to give our trustees easier access to amend the website.
We also decided that since our treasurer Gary did not have time to fulfil his task as treasurer we had to find a new one, and A McNish decided to step in and organise spreadsheets and whatever else needed to keep a track of the charities finances.
A Heath Technology Assessment Program asked us to review a vignette on Dupuytren’s, Anna and Judith both did so for them.
Working on an editorial for Sobi to have a few pages about the charity and patients perspectives in a handout for GP’s. and we produced an article for the Paget’s bone society about a suspected link between Paget’s and Dupuytren’s/ Peyronie’s.
22 November 2013
A meeting in Manchester with Nice , members of the BSSH, Sobi, BAHT, BDS and the technical committee about the multi technology appraisal of Collagenase, how it will take place, how the research will be done, what we can do to help and what the expected time frame is. It was a constructive meeting.
21 November 2013
Anna Schurer met up with Mark bell, the Sobi representative to discuss how we can work together to improve understanding of Dupuytren’s Disease under the medical profession and the general population. Sobi is very committed to the product and I was impressed with Mark’s knowledge of the conditions it might be able to treat in the future.
18 October 2013
An email arrived from a Manchester journalist, wanting some more information on Dupuytren’s disease. This resulted in a page-long feature http://mancunianmatters.co.uk/content/291113612-disease-turns-your-fingers-claws-living-painful-dupuytren%E2%80%99s-contracture
7 October 2013
We were approached by Mr Birgir Gislason who has been diagnosed with Peyronie’s in the past and is eager to help anyone suffering from this condition with support and information. He has agreed to become advisor to the BDS as we did not have anyone with specific Peyronie’s knowledge so far. His website www.MyPeyronies.com shows the extend of his knowledge.
7 October 2013
We received emails from Nice, the appraisal process for Xiapex has been confirmed and they were asking for our participation and for us to nominate patients and clinicians who would be willing to share their experiences with the disease and the treatment options with the committee. For this we had 3 weeks to sort it out, and it was a tight squeeze, but we managed to get 2 surgeons and 7 patients nominated. When they have all the information the chair will choose 2 patients and 2 surgeons out of all nominees ( other groups were also asked to nominate) who will give evidence at a meeting next year.
2 September 2013
The International Dupuytren’s Society announced the next International Dupuytren’s Symposium will be held in Groningen, the Netherlands in May 2015.http://dupuytrensymposium.com/
For personal reasons our chairwoman Judith Proctor decided to step back, she agreed to stay on as trustee with limited functions and do what she felt able to do, without the pressures of being chair. Anna Schurer has stepped in as acting chair, until we can sort out something permanent at the next AGM.
It was announced that a small Swedish company Sobi would get the rights to market Xiapex for Auxilium, in Europe and Asia.
We finalised our reply to the BSSH, explaining how we feel about the option of radiotherapy in early and aggressive forms of Dupuytren’s. It took a while because the articles they had quoted were difficult to find, but we managed to read most of them in full and the rest as abstracts, and quote other, more up to date articles in reply. We shall wait and see if we get a reply to this.
End of April 2013: Auxilium, the manufacturers of Collagenase (Xiapex) took over distributing it in Europe. So far Pfizer had done this, and Auxilium distributed in USA and Canada. But as from end of April 2013 Auxilium has not renewed the contract with Pfizer, and is going to do the work them selves. This has ended our cooperation with Pfizer, we hope to have a similar good relationship with Auxilium. We have met a few of their people already, and they seemed eager to work together on educating the medical profession and the public, and promised to keep us informed on clinical trials and the such.
25th March 2013. NICE scoping workshop in Manchester. Anna and Judith attended, as well as a delegation from Pfizer, Auxilium and two members of the BSSH.
NICE was asked to consider Collagenase injections as treatment for Dupuytren’s patients with one cord (as that is the way it is licensed). They wanted to find out more about Dupuytren’s disease, how it affects people, what people are affected, how quickly it recurs after treatment, what treatments are offered at the moment, why would collagenase be a valuable addition to the treatment arsenal.. Things like that It was a few hours of trying to educate NICE staff, and I think we left them with the feeling that there are no set rules in Dupuytren’s, it may/will recur but you can’t say how soon, you can’t say when a nodule will become a cord and start contracting, it may or may not settle down, surgery may or may not be fully successful.
Now they have to write a recommendation to a parliamentary commission, and then the commission decides whether to produce guidance or not.
7th March 2013 The winners of the International Dupuytren’s Award have been announced:
1st – Annet van Rijssen et al. “Five-Year Results of a Randomized Clinical Trial on Treatment in Dupuytren’s Disease: Percutaneous Needle Fasciotomy versus Limited Fasciectomy” Plast Reconstr Surg. 2012 Feb;129(2):469-77
2nd – Heinrich Seegenschmiedt et al. “Long-term outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase III Clinical Study” in Ch. Eaton et al. “Dupuytren’s Disease and Related Hyperproliferative Disorders” (Springer 2012) Chapter 44, p 349-371
Basic research section:
1st – Syed A Iqbal et al. “Identification of Mesenchymal Stem Cells in Perinodular Fat and Skin in Dupuytren’s Disease: A Potential Source of Myofibroblasts with Implications for Pathogenesis and Therapy” Stem Cells Dev. 2012 Mar 1;21(4):609-22
- I Ratkaj et al. “Microarray Analysis of Dupuytren’s Disease Cells: The Profibrogenic Role of the TGF-β Inducible p38 MAPK Pathway” Cell Physiol Biochem 2012;30:927-942
- I.Satish et al. “Fibroblasts from phenotypically normal palmar fascia exhibit molecular profiles highly similar to fibroblasts from active disease in Dupuytren’s Contracture” BMC Medical Genomics 2012; 5:15