Are you a parent or guardian of a child or young person who has been treated for relapsed or refractory rhabdomyosarcoma in the last 5 years in UK or Irish Paediatric Oncology Services? If so, please read the poster below and click on this link to watch a video for more information. https://www.youtube.com/watch?v=8l7RfKsCH80
REFoRMS, led by Dr Bob Philips and Dr Jess Morgan at the University of York is an important research project designed to understand the treatment decision-making processes in families where a child or young person has relapsed/refractory rhabdomyosarcoma. This is a complex point in the journey where treatment options may be more limited and the survival odds sadly decrease.
The ultimate aim of the project is to help influence guidance for Clinicians to inform decision making and facilitate the incredibly difficult conversations that take place at the point of relapse. Children’s Cancer and Leukaemia Group – CCLG awarded this grant in December 2020 and special named funds Be More Ruby and Pass The Smile For Ben amongst others provided the funds necessary to make the project happen.
In early 2021, I joined the patient/parent advisory group on this work alongside Be More Ruby’s parents, Andy and Claire and Pass the Smile for Ben’s Dad, Scott. The purpose of this group is to help shape the project by providing the parental viewpoint on the project plans for example, the type of research data, how to present it, devising interview questions and ensuring the project delivers meaningful resources to hep families.
So, please, please read the poster, watch the video and consider participating. Feel free to contact me with any queries and use the email address in the poster to sign up.
HELP US MAKE CHANGE FOR THE FUTURE OF FAMILIES EXPERIENCING RHABDOMYOSARCOMA.
