Alice’s Arc and Children’s Cancer and Leukaemia Group (CCLG) are proud to announce a new research project that has been launched to help support families and clinicians with treatment decisions for relapsed and refractory rhabdomyosarcoma. The project is led by Dr Jess Morgan from the Centre for Reviews and Dissemination at the University of York.
The work is entitled ‘Living REFoRMS’ and it builds upon the work of the original and ongoing CCLG-funded REFoRMS project, which investigates how families make decisions when their child has relapsed or refractory rhabdomyosarcoma and assesses the effectiveness of new treatments.
The new study takes the form of a ‘living’ systematic review where evidence is regularly searched, assessed and reported – as opposed to the usual one-off review – and is the first of its kind in childhood cancer. The goal of Living REFoRMS is to create a ‘dynamic’ online resource for families and clinicians. This will be made available to families and clinicians via CCLG and Alice’s Arc, which will make it easier for them to keep informed.
Dr Jess Morgan said: “Living-REFoRMS is the first-ever living systematic review in children’s cancer, which is really exciting.
Sara Wakeling, CEO of Alice’s Arc said: “The point of relapse is really complicated, because it raises lots of questions like if my child only has this very small chance of survival, what kind of treatment do I want to put them through? The impact of this kind of resource could be a real innovation in the provision of information, co-development of a treatment plan and a considerable support tool for families and clinicians.”
CCLG, Chief Executive, Ashley Ball-Gamble commented: “It is fantastic to be working with Alice’s Arc to fund the Living-REFoRMS project. Working in partnership with other charities helps to fund important childhood cancer research projects faster than we could do alone.”
You can keep up to date with the research team’s work on Twitter @REFoRMS_Rhabdo
