REFoRMS Project @REFoRMS_Rhabdo
Twitter account for the REFoRMS Project: Understanding decision making for RElapsed and REFractory RhabdoMyoSarcoma. Funded by @CCLG_UK Joined July 2021-
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📢 The 1st spin-off project from the baseline review has been published! The Local-REFoRMS paper looking at the use of combined surgery & brachytherapy for children/young people with relapsed/refractory #rhabdomyosarcoma is now available online! 👇 onlinelibrary.wiley.com/doi/10.1002/pb…
Following on from the successful #rhabdomyosarcoma workshop, the REFoRMS team are processing all of the info, preparing a report of the event alongside a tech briefing to outline the plans for the resource and what info it needs to contain/look like! 😃 #Research #PPIinvolvement
We are raring to go to talk about the living-REFoRMS project and how we are going to develop an online resource for information on studies for children with relapsed/refractory #rhabdomyosarcoma Big thanks to @CCLG_UK and @AlicesArc for their help with funding this work!
The REFoRMS team are excited to be at the #rhabdomyosarcoma workshop today!! We’re looking forward to a day of inspiring chat with parents, clinicians & researchers to help us develop an online resource to display information on trials for children with relapse/refractory RMS
Project Update: The second living REFoRMS review update has been completed (LSR-2) and the third update is about to start this week (LSR-3)! The LSR-2 report will be available on the @CCLG_UK website very soon! #ChildhoodCancer #Rhabdomyosarcoma #LivingSystematicReview
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Spending @CCLG_UK dollars to prioritise research objectives (idea shamelessly stolen from @drjessmorgan @drbobphillips)
What a pleasure to be in Leeds on Friday with parents, clinicians, researchers coming together to discuss how this online resource can offer maximum usefulness for those facing relapsed/refractory RMS. Thrilled to be funding this with @CCLG_UK and working with @REFoRMS_Rhabdo
We are raring to go to talk about the living-REFoRMS project and how we are going to develop an online resource for information on studies for children with relapsed/refractory #rhabdomyosarcoma Big thanks to @CCLG_UK and @AlicesArc for their help with funding this work!
@REFoRMS_Rhabdo It was a great day! Thanks so much for the cupcakes and marking Ruby’s birthday in such a lovely way 🩷
@REFoRMS_Rhabdo @CCLG_UK @AlicesArc So pleased to have been involved with this, sorry we can't be there in person today and we hope it goes well. Catch you later on zoom!
📢 Help @REFoRMS_Rhabdo shape an online resource for patients, families, & professionals to understand treatment options for #rhabdomyosarcoma that has relapsed or progressed. Workshop on Jan 19, Leeds city centre. Register your interest at ~ forms.gle/oYuozX5CrJ2jei… More info 👇🏻
Please consider attending this (costs covered)to help shape the design and functionality of an online resource aiming to provide treatment information & options for those facing an RMS relapse. We are co-funding this work with @CCLG_UK #rhabdomyosarcoma #thearcs #StrongerTogether
📢CAN YOU HELP? We're developing an online resource about Living-REFoRMS to let families & professionals access info about studies in the review. We’d love you to get involved if you have experience of #rhabdomyosarcoma - fill out the form: forms.gle/oYuozX5CrJ2jei… or email/DM us
✨🔬Exciting news! Funding is available, of up to £125k, for a 3-year #research project targeting a question in paediatric #rhabdomyosarcoma (RMS) that will improve understanding & outlook for higher-risk forms of RMS. Apply by Feb 7, 2024. Details & apply~bit.ly/3TpenjB
Great to see the first publication from this innovative @CCLG_UK-funded research - and brilliant that members of the parent advisory group are co-authors on the paper. Lived experience should be at the centre of our research and this project shows just how that can be done
We have some fantastic news just before Christmas! The original systematic review as part of the REFoRMS project has just been published in the International Journal of Cancer! This is a massive achievement for the team. Well done everyone involved! 😃 doi.org/10.1002/ijc.34…
This is great news! The REFoRMS project has got their first publication, which will help professionals know the best treatments for relapsed and refractory rhabdomyosarcoma 💪
We have some fantastic news just before Christmas! The original systematic review as part of the REFoRMS project has just been published in the International Journal of Cancer! This is a massive achievement for the team. Well done everyone involved! 😃 doi.org/10.1002/ijc.34…
So pleased to have been a part of this! #rhabdomyosarcoma
We have some fantastic news just before Christmas! The original systematic review as part of the REFoRMS project has just been published in the International Journal of Cancer! This is a massive achievement for the team. Well done everyone involved! 😃 doi.org/10.1002/ijc.34…
A heartfelt thank you and well done to you, and all of @PassTheSmileOrg's amazing supporters for raising a remarkable £200k to help fund vital #research into #rhabdomyosarcoma and drive change for future generations, ensuring children have access to kinder treatments 💛💫
THANK YOU! 💫 £200,333 💫 now raised for childhood cancer research @CCLG_UK Whatever we raise it'll never be enough, but if we can make a difference to children with cancer in the future then we HAVE to do it Next goal... quarter of a million 😳 #ForBen #MenacesForever ❤️🖤
The interview study that I'm doing for my PhD is open for recruitment! I'm really excited to learn about the experiences of parents of children who've had follow-up care for medulloblastoma or ependymoma. Please contact me for more info if you're interested in taking part🙂
We are happy to say that the SCAN-ME interview study is OPEN for recruitment! If you are a parent/guardian of a child who has had follow-up scans for #medulloblastoma or #ependymoma, we would love to speak to you about your experiences. Find more info about the study below👇
Great to hear about the progress of this project which could make a big impact on follow-up care for children with leukaemia 👇
⭐ Leukaemia surveillance review ⭐ Our systematic review looking at the impact of routine off-treatment surveillance testing on survival for children & young people with acute #leukaemia is still ongoing. This thread provides an update on the work @crd_york funded by @CCLG_UK
⭐ Leukaemia surveillance review ⭐ Our systematic review looking at the impact of routine off-treatment surveillance testing on survival for children & young people with acute #leukaemia is still ongoing. This thread provides an update on the work @crd_york funded by @CCLG_UK
We’re following the six steps to conducting a systematic review as illustrated by the diagram below (shout out to the @REFoRMS_Rhabdo project for the great illustration)!
This video provides an excellent summary of the importance and impact of research. Through its over overview of @CCLG_UK's approach, it highlights why charities are such vital partners in the UK research ecosystem👏
Why do we research #ChildhoodCancer? Because every child with cancer deserves a safe and effective treatment. Earlier this year @drbobphillips gave a fantastic talk for families about the importance of #research 🩵 Watch the full talk on our YouTube👉 cclg.uk/3k7RsKK
A phase 1, first-in-child, multicenter study to evaluate the safety and efficacy of the oncolytic herpes virus talimogene laherparepvec in pediatric patients with advanced solid tumors frontiersin.org/articles/10.33… Happy to share our publication on TVEC in kids. Congrats team!
Welcome to the SCAN-ME study twitter page 👋! The SCAN-ME project is looking at follow-up scans for children and young people with #medulloblastoma or #ependymoma. This🧵gives a summary of this project and what we want to achieve. (1/11)