We work with patients, carers, supporters, health professionals and researchers to drive awareness of sarcoma, promote early diagnosis and improve patient experience.
You can also help by sharing your experience as a patient by taking part in a survey from a team at UCLH or in a more involved way by being part of a sarcoma group at the National Cancer Research Institute.
Take part in the Sarcoma Assessment Measure study
Patient Reported Outcome Measures (PROMs) assess the quality of care delivered to NHS patients but from the point of view of the patient him or herself. A team at UCLH, with funding from Sarcoma UK, want to hear from sarcoma patients in order to create a PROM specifically about sarcoma.
In the first stage of the Sarcoma Assessment Measure (SAM) study, over 120 people took part in interviews to help the team get a deeper understanding of the issues that are most important to people with sarcoma.
In stage 2, the team we want to dig a little deeper and find out more about these issues.
The more people that complete the questionnaire, the better the quality of the sarcoma-related PROM.
If you would prefer a paper copy, you can email SarcomaResearch@uclh.nhs.uk.
Contribute your patient voice to research
Have you had experience of sarcoma services as a patient?
The National Cancer Research Institute (NCRI) drives clinical research and is looking for new patient representatives to join the Sarcoma group in Summer 2018. Your input from a patient perspective on research ideas and the way studies are designed will help lead to better research.
Potential members would need to be able to attend two or three meetings a year for the next three years to help the NCRI at all stages of their work to develop clinical trials and high quality studies for sarcoma treatments.