Thursday, 5 August 2021
Thursday, 29 July 2021
Thge first radiotherapy video is now life! It is titled "does radiotherapy help for Garrod's pads (dorsal Dupuytren's)? It can be found on YouTube. The aim is for a new video to go life every Thursday at 6pm, so keep a watch on our YouTube account! A teaser: next weeks will be about: "When why and how to watch and wait".
We have started recording new (short) videos explaining a bit more about radiotherapy, each based on one question. Dr Shaffer has made a list of questions he gets asked many time, and we are going through them together. The plan is for them to start appearing on our YouTube channel shortly, and in anticipation Dr Shaffer has posted a new blogpage as well: When is it too early to have radiotherapy Preparations for the online Dupuytren conference are well on the way, as the main accent will be on research we are hoping for a few good webinars or online meetings, the abstracts sure look great! As soon as there are videos for patients to see we will let everyone know. Join us on our Facebook group, or send me an email if you have any questions. Take care everyone!
Monday, 31 May 2021
Time for an update. A call has gone out for abstracts for the oncoming (virtual) Dupuytren conference, this time the accent will be on research. Anyone with research they can and want to present to other researchers and Dupuytren doctors or advocates, please respond! " The International Conference on Dupuytren and Related Diseases is back on track for 2021. Reinvented. COVID-proof. 100% virtual and better than ever. We've fixed the two major problems with international virtual conferences: Problem 1: An all-day live virtual conference can not fit 24 different time zones. Solution: Divide the conference into short sessions, ninety minutes maximum. Host one session every two weeks. Go live at the best time for simultaneous participation in Europe, the Americas, and Australasia. Problem 2: Virtual conferences can be boring. Solution: Register now for pre-conference access to pre-recorded presentations. Watch and submit your questions ahead of time. Live chat during each session with speakers and attendees. This will be a more engaging, intimate experience, more like expert small group discussions than large auditorium lectures. We're very excited to lead the way with this new collaborative model for scientific advancement. Speaker Call for Abstracts: Share your work with the world! Submit your presentation abstract now to https://dupuytrensymposium.org/submit-abstract/ Learn. Lead. Help forge a better future for Dupuytren and related diseases. Don't miss this unique opportunity! See details at https://dupuytrensymposium.org/" Other news: The Dupuytren Award has been decided, this years winners are: In the category “Basic Research”: - Lynn Williams et al. "Identifying collagen VI as a target of fibrotic diseases regulated by CREBBP/EP300" PNAS 117 (2020) 20753–20763. The award is shared with - Thomas Layton et al. "Cellular census of human fibrosis defines functionally distinct stromal cell types and states" Nature comm (2020) 11:2768 In the category “Clinical Research”: - Osaid Alser et al. "Serious complications and risk of re‑operation after Dupuytren’s disease surgery: a population‑based cohort study of 121,488 patients in England" Nature Sci Rep (2020) 10:16520 Massive congratulations to the winners! We are so happy that research is ongoing to find new and better treatment options for us. We have added a new webpage to our site. This is NOT meant to diagnose any patients, merely to say : a lump may not be Dupuytren's, there are other possible diagnoses and most are benign. Do get any new lump checked out by a qualified doctor! https://dupuytrens-society.org.uk/lumps-in-the-adult-hand-and-wrist/
Monday, 1 March 2021
March has come, the weather is picking up, Covid is still here. Seeing it's been a while since the last blog, here is our main news: The 2021 conference is not taking place as a face2face conference this year either, there may be some webinar type online events instead. The DISC trial still needs more patients. From the team: DISC Trial is an ongoing study in the NHS to investigate if an injection of collagenase is as good as surgery at treating Dupuytren's Contracture, and whether the effects of treatment are sustained in the short term. This will help decide which treatment for Dupuytren’s is the safest and most effective for patients in the near future. Every participant is really important to our research and we thank those who are already involved in the trial. Your contribution is most appreciated and continued support to complete study questionnaires is important to ensure we have a good amount of information to report on from this study. Although the DISC trial is nearing the completion of recruitment, we still very much welcome new participants to join the study. If you can access one of the NHS hospitals running the study, meet the necessary criteria and are willing to take part in the study, you will be assigned to get either surgery or collagenase injection. This will be done randomly by a computer, with an equal chance of getting either of the two treatments. Neither you nor the surgeon chooses which of the two treatments you will receive, but you will receive care as expected for an NHS patient regardless. After treatment, patients will be asked to complete questionnaires for up to two-years to assess how they feel about their hand and the bend in the finger will be measured at regular intervals. Further details regarding the DISC Trial are available on the study website: https://www.york.ac.uk/healthsciences/research/trials/research/trials/disc/ More general information on taking part in research in the UK is available here: NIHR Be Part of Research: https://bepartofresearch.nihr.ac.uk/ If you are interested in taking part or require any further information about this study, please do not hesitate to contact the DISC Trial Management Team for further information email: email@example.com Our newsletter will go out shortly with information on an embroidery project, the DISC trial and other news. If you are a member, keep an eye on your inbox 5-7 days from now! If you're not a member, join now!
Thursday, 29 October 2020
We had our 2020AGM. We had a good turn out (on Zoom of course), and a lot of good ideas were discussed. Sad news: Birgir Gislason, our Peyronie's patient trustee, is standing down as he is moving abroad soon. We shall miss him, but wish him all the best and are grateful for the support he has given the charity and those struggling with Peyronie's. The Dupuytren Conference will be held as virtual meeting in 2021, sad as there will not be any inpromptu discussions with people in the corridors, but the best decision considering present circumstances. We are still hoping there will be a strong charity representation. Finances: Amazon Smile is a steady source of income for our charity, not a big source at the moment but the more people start using Smile and setting our charity as their preference, the better it will be! Please all do so. (just regsiter at Smile.Amazon.co.uk and shop as normal. Our webinars and videos are a big success, we are thinking about producing some more. They can be found on our YouTube channel: bit.ly/31gieUA We discussed articles the charity can produce to inform people of what Dupuytrens and related conditions are and what we do. We have done a few surveys in the last 6 months, and may well do more. These will help if we do a presentation at the 2021 conference.