The Osteosarcoma Listening Project
anecdote to evidence
the osteosarcoma listening project
your child first
about the project
When treatment ends, every child or young person diagnosed with Osteosarcoma leaves behind more than a medical record.
Alongside scans, samples and clinical data, families carry another form of knowledge: memories of a child's life before diagnosis, the events leading up to diagnosis, the treatment journey, and the observations, questions and insights that emerge along the way. This knowledge is never formally recorded and so is lost over time.
The Osteosarcoma Listening Project was created from the recognition that families may hold valuable observations and experiences that aren't captured within traditional research. The project is parent-led and founded by the parent of a child affected by Osteosarcoma.
Participants are invited to share their child's story in their own words. This may include life before diagnosis, personality, interests, activities, symptoms, diagnosis, treatment, recovery, recurrence, bereavement, or anything else that feels important. Details that seemed insignificant at the time can take on new meaning in hindsight.
Stories will not be edited or reshaped to fit a particular narrative. The purpose is to preserve lived experiences as they are told and to explore what may be learned when many such experiences are considered together.
The Osteosarcoma Listening Project aims to complement scientific research by collecting, preserving and systematically analysing the knowledge, experiences and observations held by families. By bringing together insights that, on their own, would be regarded as anecdotal, the project seeks to move from anecdote to evidence, revealing patterns and generating new questions that could help inform Osteosarcoma research.
take part
Parents, carers and guardians of children and young people diagnosed with Osteosarcoma are invited to contribute to the Osteosarcoma Listening Project.
You can share your story in whichever way feels most comfortable for you. There is no right or wrong way to participate, and no expectation about how much you should share.
You may choose to:
• Write your story and send it by email
• Submit an audio or video recording
• Take part in a one-to-one interview via Teams
You can tell your child's whole story or focus on a particular memory, experience, observation or question. Some participants may wish to reflect on life before diagnosis, while others may want to discuss treatment, recovery, recurrence, bereavement, or something they have noticed only with hindsight.
An optional story framework is available if you would find it helpful, but there is no requirement to follow it. You are free to tell your story in your own way.
Submissions from families around the world are welcome.
As a fellow parent of a child affected by Osteosarcoma, I approach this project not as a researcher, but as a peer who understands how difficult—and how important—it can be to tell these stories.
Whether you have a detailed account to share or just one thing you feel needs to be said, your contribution matters.