Award Title: Living-REFoRMS - A living systematic review of early phase studies for children and young people with relapse and refractory rhabdomyosarcoma
Funder: Children's Cancer and Leukaemia Group

Abstract: New treatments are continuously being developed for rhabdomyosarcoma which 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 help families and clinicians make treatment choices is a particular challenge in current medical practice. 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 do two things: 1. Develop a living systematic review of studies into new treatments (early phase studies) in relapsed and refractory rhabdomyosarcoma called Living-REFoRMS. Living systematic reviews are a relatively new method where, instead of only having one search of the literature, 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. 2. 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 the CCLG, and we will use their experience in communicating complex childhood cancer information to ensure it best serves the community. 
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.

Lay Abstract: New treatments are continuously being developed for rhabdomyosarcoma which 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 help families and clinicians make treatment choices is a particular challenge in current medical practice. 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 do two things:
1. Develop a living systematic review of studies into new treatments (early phase studies) in relapsed and refractory rhabdomyosarcoma called Living-REFoRMS. Living systematic reviews are a relatively new method where, instead of only having one search of the literature, 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.
2. 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 the CCLG, and we will use their experience in communicating complex childhood cancer information to ensure it best serves the community.
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.

Research Activity Codes: 6.9 RESOURCES AND INFRASTRUCTURE (TREATMENT EVALUATION);7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT)
Health Categories: CANCER AND NEOPLASMS