Funded by Alice’s Arc and CCLG Special Named Funds including Angus’ Door, The Jenni Clark Fund, Ollie’s Star, Team Jake, Pass The Smile for Ben, Jacob’s Join, Hattie’s Rainbow of Hope Appeal and Super Ruby’s Rhabdo Raiser
Lead investigator: Dr Jessica Morgan, University of York
Award: £99,258.92
Awarded January 2022
New treatments are continuously being developed for rhabdomyosarcoma that has not responded to initial therapy (refractory) or has come back after treatment (relapsed). Keeping track of new developments so that the most accurate information is used to make treatment choices is a particularly difficult for families and clinicians.
A recent CCLG-funded study called REFoRMS included a systematic review of treatments for children and young people with relapsed and refractory rhabdomyosarcoma (REFoRMS-SR). Systematic reviews are a form of research where all previous studies in an area are found and their quality is assessed before the results are combined to summarise the best evidence available at that time.
This new project plans to develop a living systematic review of studies into new treatments for relapsed and refractory rhabdomyosarcoma called Living-REFoRMS. Living systematic reviews are a new method where the evidence is regularly searched, assessed, and summarised so that the information is the most up-to-date that it can be. This living systematic review will look for completed research and currently open trials in this area, from all around the world.
The research team at the University of York, led by Dr Jessica Morgan, also want to develop a high-quality, regularly updated, online resource to share the findings from Living-REFoRMS that will be accessible to families and clinicians, and will help and support decision making in relapsed and refractory rhabdomyosarcoma. The online resource will be developed with and hosted by CCLG, so that families and clinicians only have to check one place instead of searching through many. The project will include a project steering group of families with experience of relapsed and refractory rhabdomyosarcoma, and professionals with expertise in this area, who will meet regularly to advise the researchers on this project.
You can see the latest quarterly review here.