REFoRMS Project
@REFoRMS_Rhabdo
Followers
172
Following
138
Media
88
Statuses
239
Twitter account for the REFoRMS Project: Understanding decision making for RElapsed and REFractory RhabdoMyoSarcoma. Funded by @cclguk
Joined July 2021
Hello👋and welcome to the REFoRMS project twitter page!. An academic project focused on RElapsed and REFractory RhabdoMyoSarcoma in children and young people - known simply to us as 'REFoRMS'. The following thread describes our project and what we set out to achieve. 🧵.(1/11).
2
7
10
A podcast providing a summary of the project is also available (without the video) here: .
0
0
1
Generate videos in just a few seconds. Try Grok Imagine, free for a limited time.
739
3K
10K
We hope this video helps to support other families and HCPs working to improve practice in this area. We want to thank all of the families who participated in this project and for sharing their stories so openly. We'd also like to thank @cclguk for funding this work.
1
0
1
We recently completed the analysis of the qualitative study working with families to understand decision making in relapsed/refractory #rhabdomyosarcoma. A link to the video summarising the findings of this project is below. 👇.
1
2
2
The sixth update of the Living-REFoRMS review evaluating new early phase studies for children & young people with relapsed/refractory #rhabdomyosarcoma has begun!. Meanwhile, the team are continuing to progress with developing the website to present the data from this review! 😃
0
2
4
The 5th update for the living-REFoRMS project (LSR-5) is now available to see on the @AlicesArc website!. This review has now identified >170 published early phase studies with >1350 children and young people with relapsed/refractory #rhabdomyosarcoma
0
4
5
One of our researchers @drjessmorgan recently did a short talk at the @CCLG_UK research discovery day! . She explained what early phase trials are, and how the REFoRMS project is involved in understanding this #research! . Check it out here 👇 .
0
4
7
The Living-REFoRMS reports are now also available to read on the @AlicesArc website! . It's so important to have our findings publicly available for everyone to read online so this is great news! 😀. #rhabdomyosarcoma #childhoodcancerawarenessmonth.
alicesarc.org
Hands Decals – Left Copy 8Created with Sketch. Research We want these funds to help advance the research in to rhabdomyosarcoma in order to find better treatments to lengthen and improve the quality...
0
5
7
Project update: The 4th living-reforms update report (LSR-4) is now available to read on the @CCLG_UK website! 😀. This review has now identified over 166 published early phase studies with >1300 CYP with relapsed/refractory #rhabdomyosarcoma
0
4
8
Super excited to be involved in this year's @CCLG_UK Research Discovery Day in partnership with @CandlelightersT!. Early phase trials will be a key discussion point on this day, so make sure to look out for information on the REFoRMS project!😀.
Exciting news! ✨🎗 The CCLG Research Discovery Day is back and bigger than before, in partnership with @CandlelightersT. Join us to explore #ChildhoodCancerResearch, meet experts and connect with families. Learn more & get your free ticket at:
0
2
8
Project update: The 3rd living-reforms update report (LSR-3) is now available to read on the @CCLG_UK website! 😀. The REFoRMS review has now identified 165 published early phase studies including >1300 CYP with relapsed/refractory #rhabdomyosarcoma
0
6
8
📢 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! 👇.
0
5
8
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
0
0
3
We chatted about the use and design of the online resource. All of this information will be used to improve the accessibility and transparency of research into treatments for children with relapsed/refractory #RMS. And we even finished the day with some amazing cupcakes!!
1
3
11
The REFoRMS #rhabdomyosarcoma workshop was a success!! . We want to say a massive thank you to everyone who attended! Your voices have been heard and we will make sure to build upon everything discussed today in creating the online resource!. #PPIimpact #PublicInvolvement.
1
3
10
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!
1
2
14
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
0
3
10
You can find out more about The REFoRMS Project in our pinned tweet and more about Living-REFoRMS in this thread:.
We are excited to share that the REFoRMS project has received additional funding to become a living systematic review, aka ‘Living-REFoRMS’!. This is the first ever living SR in the field of childhood cancer research!. Thanks to @CCLG_UK and @AlicesArc for their ongoing support!
0
0
1
📢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: or email/DM us
1
8
13
0
0
1
Well done team!.@ConnorJEvans @lucy_shepherd29 @drgemmabryan Helen Fulbright, Scott Crowther - @PassTheSmileOrg, Sara Wakeling - @AlicesArc, Claire & Andy Stewart - @BeMoreRuby1, @ProfFaithG, Julia Chisholm, @drbobphillips, and @drjessmorgan. @CCLG_UK @crd_york.
1
0
12